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    Community Voices

    How can I still be alive after everything I've been through

    <p>How can I still be alive after everything I've been through</p>
    5 people are talking about this
    B.L. Acker

    CDC Director's Comments About COVID Deaths Outrage Disabled People

    On the morning of Friday, January 14, 2022, ABC aired a segment with Rochelle Walensky, the current director of the Centers for Disease Control and Prevention. In the interview, Good Morning America host Cecilia Vega asked the head of the CDC, “Is it time to start rethinking how we’re living with this virus — that it’s potentially here to stay?” Walensky’s response, as it was presented by the morning news show, triggered immediate outrage throughout the disabled community. She appeared to be jovial, explaining that those dying of COVID-19 were mostly people with preexisting conditions: “The overwhelming number of deaths — over 75 percent — occurred in people who had at least four comorbidities. So really, these are people who were unwell to begin with. And yes: really encouraging news in the context of Omicron.” Both ABC and the CDC made statements after the fact that her interview had been edited for time and was misrepresentative of Walensky’s statements as a whole. Good Morning America’s webpage swiftly replaced the shorter, modified clip with the original, longer, unedited version that more accurately placed her statement within a much larger exchange. This exchange highlighted the effectiveness of the vaccine in lowering death rates overall. However, the damage was already done. The hashtag #MyDisabledLifeIsWorthy was born. The hashtag has since taken on a life of its own on social media, with disabled people, adults, and children alike expressing their utter outrage and frustration. folks have pushed the narrative of vulnerable people’s lives being disposable for this entire pandemic (& before), and to see @CDCDirector finding our deaths “encouraging” bc they are less valuable to y’all than economical stimulation is so so appalling.#MyDisabledLifeIsWorthy https://t.co/RvScLg7ylK— devin norko (they/them) (@mxdevinn) January 9, 2022 i’m a kid. a disabled one who’s tired of ablebodied people treating disabled people being the ones dying as “very encouraging”, or “would’ve happened anyways” (real words i’ve been told) because we’re seen as lesser. i’m a human, not a damn data point. #MyDisabledLifeIsWorthy https://t.co/GjLl3YSpda— ⚢ olivier yadriel (@lesbosigma) January 9, 2022 Just because I am sick, doesn’t mean it’s ok if I die. It’s disgusting that people see people like me as just necessary casualties so they can go to a concert #MyDisabledLifeIsWorthy— idk man ♿ (@mediocrebitch47) January 9, 2022 the use of words like “only” when making statements like “it’s only the vulnerable who are dying,” tells me exactly all i need to know about how much you value my life & what you think of disabled people. #MyDisabledLifeIsWorthy— chase nadine (@gangewifre) January 9, 2022 Some have even gone as far as to connect the initial statement as it was misrepresented by Good Morning America as the CDC supporting Eugenics. hey @CDCDirector , eugenics is not a viable pandemic strategy. to present this as good news is telling disabled people that we are expendable for the sake of abled’s enjoyment of a lockdown-free society. #MyDisabledLifeIsWorthy https://t.co/UTH8qVp5cQ— new year new meshinui (@m0shim0chi) January 9, 2022 hey @CDCDirector , eugenics is not a viable pandemic strategy. to present this as good news is telling disabled people that we are expendable for the sake of abled’s enjoyment of a lockdown-free society. #MyDisabledLifeIsWorthy https://t.co/UTH8qVp5cQ— new year new meshinui (@m0shim0chi) January 9, 2022 By Friday afternoon, it was announced on Twitter that over 150 different disability advocacy groups had united and created a petition to meet with the head of the CDC herself to discuss the matter and that a meeting was set. NEW! @CDCgov Director Walensky’s controversial statements unleashed the power of @Imani_Barbarin‘s #MyDisabledLifeIsWorthy. #Disability orgs to meet w/Director Walensky on Fri Jan 14. Nearly 150 groups have signed on with demands we’ll make at tmrw’s mtghttps://t.co/IjeiuWHsWk— Disability Rights Education & Defense Fund (@DREDF) January 13, 2022 Still the hashtag continues to spread because the sentiment that disabled lives are somehow inherently worth less is one our community has faced for some time now. Though this isolated incident is currently being addressed, it does little to change the sad reality we face every day, a reality that has grown exponentially worse since the start of this pandemic. In the early days of the pandemic, when lockdowns were first suggested and it came to light that the vast majority of early deaths being reported were among the elderly and the disabled, our lives themselves became the topic of debate. Many people insisted that our lives were an acceptable loss if it meant bolstering the economy and reopening the country. Some callous people even went so far as to suggest that many of us were going to die early anyway and that we on average contributed less to society, that we were essentially an unnecessary burden that society could afford to shed. The very concept that a disabled life is worth less and would be an acceptable loss for the betterment of society as a whole, that society should systematically cleanse itself of the weakest among us, is eugenics in a nutshell. This is a sentiment I have addressed before, and one I have willingly lost friendships over. My husband and I are both disabled. I have been diagnosed with severe major depression, generalized anxiety disorder and PTSD, as well as having two meningioma tumors on my brain. My husband has bipolar disorder, PTSD, and a myriad of physical ailments and injuries. We both have been designated as disabled. Being given a disability label does not mean we are acceptable losses. No one who is disabled would be an acceptable loss. No disabled person who has died from this pandemic was an acceptable loss, either. As a disabled person, this is the line I draw in the sand. This is a mountain I will gladly die upon. #MyDisabledLifeIsWorthy ALL disabled lives are worthy. I am a mother, a wife, a friend. I am a writer, a journalist, and a mental health advocate. My disability is but one of many hats I wear. But even if I were none of those things, my life would still be worthy. Our worth is not determined by how much we contribute to the economy. Our worth is not diminished by being or becoming disabled. While this hashtag may be new, our feelings on the matter are not. The fact of the matter is that we are collectively fed up with being treated as if our lives are worth less. We are tired of hearing people shrug off our potential deaths if it means they can go to a ball game or grab a drink at the bar. We are disgusted by people who argue that they shouldn’t have to wear a mask in order to do their part to help slow the spread of a potentially deadly disease because other people’s weakened immune systems are their own problem. We are tired of being told that anyone at a higher risk who wishes to live in fear should just stay home. Many of us can’t. We have doctors’ appointments. We need groceries and other supplies. Many of us have families or jobs. We already are going out less, many times only when absolutely necessary. We get vaccinated if and when we can. We mask up, wash up, sanitize. We are doing our best to keep ourselves safe, but we need to live, too. We deserve to live, too. It is bad enough that going out since the start of the pandemic has largely felt like trying to navigate our way through an active minefield. No masks to be seen on one side of us. Masks worn as chin straps on the other. Anti-vaxxers ahead. Holding our breath, stepping gingerly around, taking wide berths because we know one misstep, one exposure, could have potentially deadly consequences for some of us. On top of that virtual minefield, we carry with us the sad knowledge that there are people out there, people among our neighbors, co-workers, and sometimes even our family and friends, who legitimately are wishing us dead. There are people out there who would be happy to hear they could shed their masks and attend concerts and parties again, even if it meant wiping every last disabled person off the planet to get to that point. There are people in history who believed as some people today do, that disabled lives are expendable, acceptable losses. The eugenics movement began in England in the 1880s and swiftly rose to popularity in the early 1900s in the United States. Eugenics-based legislation began to be passed in 1907, and by 1931, 29 states had such laws on the books. An estimated 64,000 people, focused primarily on the disabled, were sterilized during that period in an attempt to decrease the number of disabled people through selective breeding. There are even historical leaders who have tried to systematically wipe out disabled people. Perhaps the most notable example was Nazi Germany under Hitler’s regime. Over a quarter-million people with disabilities were murdered by the Nazis during the Holocaust and hundreds of thousands more were forcibly sterilized and experimented on. But not all historical figures take that cruel stance. Some of the wisest people the world has ever known have all encouraged society to embrace and care for disabled people. Mahatma Gandhi said, “the true measure of any society can be found in how it treats its most vulnerable members.” The fact that there are many people today who view disabled people as acceptable losses does not bode well for our society or our future. Compassion is key. The Dalai Lama has stated, “Compassion is the radicalism of our time,” and, “Be kind whenever possible. It is always possible.” Nelson Mandela said, “Our human compassion binds us the one to the other – not in pity or patronizingly, but as human beings who have learnt how to turn our common suffering into hope for the future.” The question becomes, which side of history do we want to be on as a society? Perhaps in order to go forward and into our next chapter post-pandemic, we need to go backwards. Go back to a time when we valued such wisdom. Compassion matters. Disabled lives matter. #MyDisabledLifeIsWorthy

    Community Voices

    New to this group

    Just wanted to say hello, and tell you about me. My name is Tanya, I had a meningioma brain tumor, and had three craniotomies between 2010 & 2011. They left me with double vision in my right eye, and deaf in my right ear. I had been living in North Carolina since 2000, my ex husband was a U.S. Marine, and in December of 2017, I was diagnosed with brachial pneumonia, and after several visits to the doctor, and being told that I just wanted attention, in February 2018, apparently I was staying with my mom, when I called 911 for a wellness check, & thank goodness! Long story short, I wasn't "supposed" to make it through the night (8% chance). To save me, I was put on ECMO for 2 weeks. Since I woke up in April of 2018, I've had several procedures, including losing several toes from vasopressors, muscle flap surgery to repair a femoral artery rupture, and open heart surgery, (when air got into my IV line causing two strokes). Most of these were from the canulas used during ECMO, that weakened the arteries in my leg & heart. I should also mention that from the strokes, I have dystonia in my left hand, mainly my wrist, and my left index finger bends in such a way that I'm unable to tap the tip with my left thumb. So, that is my story. I would also like to mention that I have a Bachelor's Degree in Psychology, and a Master's Degree in Human Resource Management, just to give some insight into me as a whole.

    4 people are talking about this
    Community Voices
    Community Voices

    Any advice for the super stressed & depressed? #Advice #SpecialEducators #Meningioma #Depression #Anxiety

    know that may sound ridiculous, but for a while I thought I had my anxiety under control. I know my triggers, but I’m still crippled and taking baby steps does not work...I remain stuck.
    I’m tired and cranky and depressed and unhappy and getting to the point where my bed is my salvation, which I know is unhealthy.
    The idea of Exercise sounds like the devil. My limbs hurt. I’ve developed TMJ... and the idea of spending time with people is not a priority... BUT...I know I need to change and it will get better... any advice (all welcome) to speed things up?

    4 people are talking about this
    Community Voices

    Months of being told I was just overly stressed because my ex husband was deployed on a ship, I was working as a substitute teacher, and working on my Master's Degree. My doctor FINALLY admitted that I should see a neurologist, who sent me for an MRI! Meningioma brain tumor - utter PANIC - my grandma died from a glioblastoma. The first neurosurgeon that I saw told me that it was much worse than I thought; it was wrapped around the artery that connects the brain to the brain stem, and that he didn't feel comfortable touching it,but he knew an AMAZING neurovascular surgeon, and he referred me to him. Dr. Gavin Britz, saved my life!

    Part 2 - my first craniotomy was September 10, 2010, and did NOT go as planned AT ALL. I went in for a procedure on the 9th, where the plan was to cut off any blood supply to the meningioma - FAIL! It just felt like my brain was on fire. So, the next day, I went in for my first craniotomy. They made burr holes, and cut a circle out of my skull, but when my neurosurgeon went to pull it off, I had a serious bleed. So, on to plan B, which entailed A LOT of testing, and more risks - which I happily accepted, so I could be alive for my Sam Stearns

    Part 3 - LET THE TESTING BEGIN! First thing first, my neurosurgeon had to come up with a new plan - through my right ear canal. The "damage": I would be permanently deaf on the right side. Possible risk? The nerve that controls half of my face is extremely sensitive, and I could lose function. My question: do I get to watch my daughter grow up? The answer was yes, so I was all in. The tests took all day, and they were interesting, to say the least. They put water in my ear, & put me in a weird chair to test my equilibrium - yuck! Then they tested my hearing, we've all had that done... Then we waited for surgery to be approved, and schedules to be put together.
    [ ] Surgery #2 - October 12, 2010. FINALLY! My neurosurgeon told me that he would NOT be removing any tumor from my cavernous sinus because it would give me "googly eyes." Very technical term. Lol. After I woke up, he was very upset because my right eye had turned all the way towards my nose. This was nothing, compared to the balance issues I had.
    [ ] Part 4 - physical therapy
    I found an amazing physical therapist about 20 minutes from where I was living in Wilmington, NC. Her name is Anne, and she taught me how to walk, and balance so well, that she, basically, had to make me leave. Not having an inner ear, on my right side, took A LOT of getting used to!

    B.L. Acker

    With All I've Overcome Cancer Shouldn't Define My Worth In COVID-19

    There’s nothing quite like those moments of enlightenment when you realize your feelings and motives go deeper and are more personal than you previously realized or openly admitted. Why do I care so deeply about people being responsible and staying home as much as possible during this pandemic? Whenever I was asked, my first impulse answer was always that I didn’t want anything to happen to those I care about and their loved ones, that there are people in my life who are older or are immunocompromised, friends who are considered high risk because they just got over cancer or have just had a baby. I care a lot, perhaps too much at times, about other people, mostly because I know what it is like to struggle and I don’t want anyone else to needlessly go through any heartache or pain. I spend so much time thinking about how much everything affects others, I often forget to consider my own personal situation. Perhaps I also struggle to consider myself among those who need extra protection, those who are determined to be at a higher risk, those in the most danger. I have come to see myself as a fighter, a survivor, and being lumped into that category is like accepting I am fragile and weak, like I am less than the strong person I believe myself to be. I have been through a lot in my life.  As a child, I endured every type of abuse imaginable. Physical, mental and emotional abuse lent to my post-traumatic stress disorder (PTSD) diagnosis. Sexual abuse led to my doctors telling me I might never be able to have children. Yet, I persevered. At 16, my abusive childhood culminated with my mother shooting my father. I was bounced around among family members for a little over a year before finding myself on my own before I was even 18 years old. Yet, I survived. Even though addiction ran in my family in the form of both drug and alcohol abuse , and trauma like mine often serves as a catalyst for substance abuse , I managed to avoid both and powered on. I have struggled with severe depression my entire life, due in part to abuse and trauma , and partly due to a genetic mutation that deprives my brain of the substances it needs to adequately moderate my moods. Yet, I found ways to continue to function and continue to fight. I have experienced much heartache over the years, from failed, unhealthy and abusive relationships , to multiple miscarriages. Yet, I refused to let any of it ultimately break me. Cancer runs in both sides of my family. It stole my mother’s brother way too young. I watched as it slowly ate away at my father until there was nothing left of him and as it almost killed my mother.  Starting in my 20s, I have had numerous cancer -related health scares of my own. I had two precancerous atypical pap smears that required cryosurgery, and was told afterward they were caught just in the nick of time. In my 30s, they found a mass on the side of my breast extending under my arm that was deemed noncancerous. At 40, I had to have one of my ovaries removed because there was a large cyst on it with a fibrous mass inside. Thankfully, the biopsy after my oophorectomy showed the mass to be benign. And finally, a little less than two years ago, doctors found not one, but two meningioma tumors on my brain. Yet, I continue on and refuse to lose hope. I continue on because I am a survivor. That is what I do. I keep going. I power on. I fight whatever life throws my way. And I do so with kindness in my heart. I never want my own life experiences to make me jaded or cruel. I know what it feels like to suffer and I would not wish my struggles on anyone else. I try to always show others kindness, regardless of whether it was ever shown to me in my own times of need. I have always firmly believed there is too much suffering in this world and it is our responsibility to be kind to one another, to watch out for each other, and to ease each other’s pain whenever possible. And somewhere along the way, I rediscovered myself. I found a miraculous inner strength, a renewed sense of purpose and even was blessed enough to have wonderful children and find a deep and true lasting love. I have transformed my own pain into mental health advocacy for others. I write and speak out to encourage others to keep going, to never give up. I empathize with the struggles of others and let them know they are not alone. My writing has been showcased worldwide, discussed on television, radio and internet media programs and shared by numerous government agencies, private practices and advocacy groups along the way. I have managed to reach and help more people than I ever imagined possible. My children and my writing are a legacy I am proud to leave behind. I have come a long way in life and I have overcome many obstacles along the way. I am a fighter. A survivor. However, to the medical community, I am reduced to a simple list of stats. Though in normal times, doctors often make an effort to acquaint themselves with their patients to better serve their needs, we are currently in the middle of a worldwide viral pandemic. The number of infected is increasing daily by the thousands in my country. And to make matters worse, I happen to live in New York — the current epicenter of the virus in the United States. Doctors don’t have the time or the energy to get to know all of their patients well right now in an emergency setting. They have to make split decisions based on medical history prior to infection. And the simple fact is: I have cancer . I have two tumors on my brain. I’m honestly not sure it even matters the tumors are benign or that right before the pandemic was declared a national emergency, my neurosurgeon informed us my tumors have shown little to no noticeable growth in the last 18 months of MRI scans. The cancer diagnosis alone means I am considered high risk and my treatment is considered a lesser priority than someone else without preexisting conditions. The fact I have continuously fought hard and survived many things over the course of my entire life is irrelevant. The fact I have dedicated years to helping and advocating for others is irrelevant. The fact I am otherwise relatively healthy is irrelevant. Even the fact I am a mother and a fiance is irrelevant because every single person who comes through the hospital doors is family to someone. They are all a son or a daughter. Many are parents, grandparents, spouses, friends. We all have a story. But my story can be reduced to one word, a word that makes my treatment less of a priority during a pandemic. Cancer . As much as I want to say, want to believe, the primary reason, if not the only reason, I want people to stay inside and be responsible is to protect others, I have to accept I need protecting, too. My health and well-being is important as well. I am part of that high-risk group. If I get sick, my treatment will possibly, if not likely, be deemed less of a priority. I don’t want to see myself as someone needing protection because I don’t want to be seen as a victim. I don’t want anyone to feel sorry for me. I am a fighter. A survivor. I have beaten the odds again and again. I have a lot of living left to do and a lot of fight left in me. I have children who I long to see grow into their own. I have a wedding to plan. I have more writing and advocacy to do. And I have this cancer to beat. My staying home unless absolutely necessary only goes so far to flatten the curve. I am depending on others to be responsible as well. Every person out there interacting is a possible carrier, and the more people congregating in a given area, the bigger and more likely the spread. The more this virus spreads, the more likely I am to get it. Hospitals in my state are already struggling to the point where do not resuscitate (DNR) orders have been put in place if somebody dies. If the hospitals become even more overwhelmed, they will be put in the same place Italy was at the apex of their crisis — with doctors having to choose who gets treatment and who dies based solely on their prior medical history. And having tumors means if the hospitals are overwhelmed, I might be deemed not worth saving because they don’t have the manpower, equipment, time or energy to save everyone. It’s easy to consider terms such as “acceptable losses” or to shrug off deaths of the elderly and sick as “the thinning of the herd” when you think in terms of abstract numbers instead of considering the actual people behind those numbers. It is different when you consider the faces and stories of those people and the families they will be leaving behind. Even one person needlessly contracting this virus and dying should be one person too many. We all have families and stories. We aren’t just faceless numbers. And many of us still have a lot of life left to live and a greater purpose left to fulfill. I didn’t come this far to only come this far. I’m continuing to fight the good fight because I want to eventually leave this world a better, kinder place than it was when I entered it. I don’t want to die. I don’t want any of you to die, either. For more on the coronavirus, check out the following stories from our community: The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19 If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me How America’s COVID-19 Response Is Exposing Systemic Ableism Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus I’m Afraid I’ll Be Told to ‘Sacrifice’ My Health for COVID-19 Patients 10 Face Masks People With Chronic Illness Recommend A version of this piece was originally published on Unlovable.

    Community Voices

    Seriously?

    So, I have had a ROUGH 10 years! In 2009, I was diagnosed with a meningioma brain tumor that was wrapped around the main artery from the brain stem & the brain. I almost died during the first craniotomy, because I had an artery attached to my skull, that started to bleed when they removed it; so my neurosurgeon decided to take a different approach, through my ear canal. This left me permanently deaf on my right side. Also, my right eye has permanent double vision. BUT, I was able to be alive to watch my daughter, who is now 21, grow up. In 2018, while my daughter was in her second semester in college, I ended up back in the hospital, this time, they told my mom to call my family because I wouldn't make it through the night. WELL, after 2 months on ECMO, rehab, MRSA, an aneurism on my aorta, I'm still here. Oh yeah, during the surgery, I had TWO strokes! We are now living in Ohio, closer to family; we were in NC - my ex husband was a Marine, and my mom, my daughter, and I all live in one house, which definitely has it's challenges. My mom & daughter are VERY similar. Between the age difference, anxiety, etc. They butt heads A LOT. I often feel like I'm being pulled in two opposite directions. I feel like I'm losing my mind

    2 people are talking about this
    Erin Akey
    Erin Akey @erinakey
    contributor

    Missing Friends You Don't Get to See Because of Chronic Illness

    I miss my friends and my life. I have amazing friends. They really are wonderful. We used to have a blast. We would have girl’s nights and get together and chat about our love of nutrition and gut health. We took trips. We went to really cool places. The Grand Canyon, Washington D.C., Orlando, Phoenix, Maui and more. Travel is and always will be my most favorite pastime of all. My husband and I used to adore road trips. Oh, and live music and dancing. We loved to go dancing and hear some good music. But things are really different now. I don’t get to see my friends very much. Well let’s be honest, I don’t see them at all. See I got sick. It was not planned and the profession of my invisible chronic illness has been swift and cruel. One oral dose of a broad-spectrum antibiotic and one IV dose of another in the same class took me from being a thriving, happy, healthy runner who did half marathons to someone who cannot even stand up from a sitting position without excruciating pain. Now don’t get me wrong, I am blessed and have a lot to be happy about. But the new me with undifferentiated connective tissue disease (UCTD), fibromyalgia, a pesky meningioma and fluoroquinolone toxicity syndrome is no longer the organizer, the doer and the life of the party. I was a leader and the planner. Things are different now — very different. In the midst of battling this illness, my husband and myself opened up a catering and meal preparation business, as well as a healthy café. Being a nutritionist is my passion and honestly, I have been able to use good clean food and gut health supplements to help me stay mobile and not bedridden most days. Some have asked me why in the world we started our meal prep service, 1031 Meals, while dealing with all of this. My answer is this — my life of pain needs to mean something. If I can help even one person by giving them good clean food, my purpose is fulfilled. We really believe this is our calling from God, to do something. But the problem is energy, or rather my lack thereof. Running a café takes a lot of energy. We work extremely long days. My husband is the chef and I am the nutritionist, recipe creator, administrative person, retail manager for our Grab and Go meals, bookkeeper, scheduler and anything else not related to the kitchen or social media. (My daughter Amanda is the social/marketing genius and she’s amazing!) My customers would never know I was sick. I can count on one hand the days I have brought my cane to work. See, you cant carry food or ring people up with a cane in one hand, so I just decided to forget it and fight through. My wonderful clients who are like family to me have no clue what my days are like. They see me smiling and talking to them about the meals and nutrition, and just going about my day. I certainly don’t want to bring anyone down with my whining. But it takes a huge toll on me. This is where I miss my friends. I know most of my friends are thinking I started this business and just forgot about them. Nobody has said that to me but slowly people just stopped messaging. It’s my fault really. We had chats on Facebook and group texts and I know I pretty much vanished. I miss that so, so badly. I miss the chats, laughs, trips and fun banter more than they will ever know. I didn’t just toss them aside for 1031 Meals. I really did not. I would give anything to be able to chat on Facebook, go out for dinner, take a trip and just be with my tribe. But I cannot do it, I just cannot. Here is why. When I get home, I am spent. I usually am limping to the point where my husband has to help me up the steps to my porch. My feet will be throbbing and the joints in my ankles, feet, toes, fingers, elbows and shoulder will be swollen and so painful that often the sheets cannot even touch. My sweet husband runs me a hot bath and then spends sometimes an hour (after running our café and cooking all day) trying to massage my feet, ankle and shoulder joints to the point where I can sleep for three to four hours. Many nights, he automatically just goes to the guest room because he can see how much pain I am in. I cry sometimes — only in front of him. I cry and sometimes vomit from pain — and he is the only one who sees and knows. I have a cocktail of supplements, medications and lotions that he helps me be sure to complete each morning and evening. I have to get on social media long enough to check orders for my customers and maybe try and scroll a little bit — but then I get sad and stop. I am so emotionally drained. In addition to the physical pain, I do not even have it in me to make small talk or chat or comment on friends posts. I just do not have the energy. Doing what needs to be done to keep the business going (thank God for employees for those times when I just cannot do it) and to take care of myself is all I can muster most days. I try to lose myself in a book or TV show during the times I am unable to sleep. A lot of my friends used to comment on how I sure am a night owl and how late I am up commenting on their posts. Well see, it usually takes a few hours after my bath, massage and meds to have it in me to read or scroll, so that’s why I do a lot of those things late at night when sleep is evading me. I promise that my friends and how they are doing are part of my daily thoughts. Sometimes, I scroll past a post of them and their families and I smile. Sometimes I cry. How do you convey to someone you care about that you love them, pray for them and try to watch their life events as closely as you can? How do you explain that you miss their company and friendship terribly, but there is just no energy to talk, chat and pretend to feel good after a long day at work? I have told a few good friends to come visit me at the café because that is likely the only time I will get to see them. See, I have a husband who takes care of me and supports me, so the little tiny bit of anything I have left each day I owe to him. And sometimes he gets nothing. To my awesome group of friends, I didn’t just go away and forget you all. I didn’t decide the job is more important than all of you. I just know this is my calling and part of the purpose behind my suffering, so I keep it up. Yes, it gives me joy. I can no longer run or teach Aquafit or even take long walks — but I can help people eat real food and get off processed fake junk. So I try my best to smile and be helpful and friendly everyday. I absolutely love my customers. I am grateful for their support of our little health ministry in the form of a café and meal prep service. So my sweet friends, when I ask you to come see me or have lunch with me, it is not that I am trying to put you out or that I do not want to make time for you outside of work. It’s just that this is my only little window of feeling slightly like myself each day where we can visit and I can seem semi-normal. I still love and miss you all more than you know and pray daily for a cure or to be “normal” again one day. Chronic illness sufferers do not mean to cut you out. We really do not. To anyone reading this, if you have a friend with a chronic illness who you have felt was slipping away or pushing you away, or who doesn’t seem to have time for you anymore, just keep texting and messaging. Let them know you care and understand. It will mean more to them than you can ever know. Those of my friends who continue to message me daily, and who ask how I am and if I need anything, will never understand what that means to me.

    During an MRI to Confirm Multiple Scleroris, Doctors Found Meningioma

    “Wait, what? Can you spell that?” I asked. “M-E-N-I-N-G-I-O-M-A,” the doctor replied. “What is that?” I asked him, quite confused. *** It started one winter day back in 1996. We all got up for school — my kids for a regular day and me to help at the school’s “Be Into Geography” program. I loved helping at school. This day was different though. I felt funny. My fingers were numb. And when I was walking, I couldn’t feel my feet hitting the ground. Kinda like walking on pillows. Such a strange sensation. At school, the other parents said, “Maybe you’re coming down with something… maybe the cold temperature has something to do with it…” Who knows? After a few days with no relief, I went to my doctor, who referred me to a neurologist. In the waiting room, my husband and I picked up a bunch of pamphlets. Dementia? ALS? Alzheimer’s? Then my husband handed me one that said “multiple sclerosis.” We read that MS causes numbness, balance issues and a bunch of other things. Could this be it? Well, if that’s it, I’ll take some medicine and be done with it. Or so I thought! The doctor also suspected MS but said I’d need an MRI to confirm. They’d look for lesions on my brain and spinal cord. Lesions? What? Several days later I had that MRI. The doctor called me. “ Yes,” he said, “there are lesions on your brain. But there is something else more concerning. You have a meningioma.” He explained that it was a tumor about the size of a grape on my brain. Most likely not cancerous but it needed to be removed. He said if not removed it will continue to grow, continue pressing on my brain and eventually kill me. It was an easy removal, he said, as it was located on the top of my brain. “We’ll cut the top of your skull, remove the tumor, and staple your skull back on.” Are you kidding me? I could not believe what I was hearing. Brain surgery? So… I don’t have MS? “There are lesions, but there’s a chance the tumor is causing some symptoms,” he said. “ We’ll make a full evaluation when the surgery is over.” The surgery went well, and my skull healed. Although now I carry the most attractive dent on the top of my head. Quite a conversation starter with any new hairdresser. And my husband is curious to see how much water it can hold. Funny man, right? Turns out, the tumor wasn’t the cause of any of my symptoms, and I do have MS. It’s a horrible disease, and although it has taken my mobility and independence and a host of other things, I’m still here. So much to be thankful for. My husband says, “We’re lucky you have MS. If they weren’t testing you for that, the meningioma wouldn’t have been found when it was, and you wouldn’t be here now.” Funny man, right?