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Stop Telling Me I Am Going to Get Better

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Since I received the diagnosis of my disease, transverse myelitis, I have been thrust into an alternate physical dimension. I remember the exact moment when I knew something was direly, direly wrong as if a switch on my old body had flipped into “sick mode.”

I was naive enough not to have panicked as I should have. I live with a disease whose symptoms mirror the state of health I should “enjoy” as a functioning survivor of a spinal tumor thanks to the lesion on my thoracic spine. It makes my body buzz as if someone rather inconsiderate has plugged me into a socket, and it kills the messages to my feet and legs, so they feel as though they’ve been asleep for 20 minutes within seconds (a very bad idea when standing upright!) It ices my throat, steals my breath, puts my head into a whirl, and some days it sucks at my very marrow to keep going.

I had to leave my job and restart my own company out of my house to accommodate my new needs. Every relationship with anyone or anything went under the microscope. I spent a lot of time crying, raging, pushing people away, hiding, feeling guilty, bargaining with God, reassessing, praying, begging and in my darkest moments, preparing myself mentally to die. Yes, the five stages of grief can occur when what has died isn’t a person, but a version of yourself.

I took meds, went to PT and saw specialists who didn’t have enough experience to treat me. My case was mishandled. I was belittled and told to take mind-altering drugs because I had anxiety. You think?

Through this journey, I have come to a place where I have accepted that this is probably as good as it’s going to get. More importantly, I am OK with that. I am OK with being sick and being walloped with fatigue out of the blue in the middle of a productive day.

I actually love working for myself and building something of my own making. I am OK with being wheeled around on my tough days when my feet can’t slide even one step further. I’m OK with being carried around the house Yoda-style by my gift-from-the-universe fiancé.

I am OK with spending more time in relaxed positions as I work. I am OK with not driving as much, with the culling of my friends’ list, with choosing to work with people who understand and don’t think less of me, with embracing chronic mysterious pain and stabbing muscle spasms (and trying not to overthink their cause!)

I am OK with it all. The weird has become the expected.

So, please stop telling me I am going to get better.

I don’t need to hear it.

Because I don’t need to hear it, don’t say it.

You say it for yourself to somehow make being with me OK for you or that someday I will become acceptable again.

Sometimes it seems like to me that people with chronic illnesses and disabilities are largely excused from the human race. Whenever I am in a wheelchair at Target, shoppers either react in one of two ways: completely ignoring me with a side eye sweep over my body as if to quickly assess why I am sitting in the chair or over engagement as if I need reassurance that I am still a viable member of the human race just because I remain seated among walkers.

I know I am viable. Because I say so. Because I feel it. Because I have done the work in my heart to get there. It was the most grueling experience I have ever undergone, but I wouldn’t change it. Because I love me more. I am a fighter, but I didn’t know how strong I could be. I am unfailingly positive, but I didn’t know I had such a bright spirit. I am a collaborator, a lifter, a gifter, a lover at my base, and I had no idea what loving myself could do for others who are also facing challenges.

The realization has dawned on me that society has a lot more work to do to accept people who look differently or live with disfiguring diseases, but it has much farther to go unraveling stereotypes of people who are ill but appear smashing on the outside! We can’t help it that we make our graphic tees look amazing!

My worth isn’t measured by my physical stamina, how many steps I can take without stumbling or by the nerve sensations I am subject to and can’t control. It is measured by me and how I feel about myself — just as I am, whether I walk or stand. When you tell me it will get better or that I have to try this magical potion or that secret cure, it sets me back. It makes me think you believe I don’t want to get better, and I am giving up.

But I’m not.

No one else is privy to my journey. No one else has the intimate knowledge of the condition of my body that I live every waking moment. I am doing the best for myself that I can as a real person. I am proud of me. I don’t need to be anyone else in order to be good enough. I don’t need the blessing of another person’s acceptance. Because even though I am weaker in body, I am stronger than I ever imagined I could be in essence.

I don’t want to change that. I don’t want to be pre-diagnosis me, non-vulnerable me. The knowledge my disease has given me is a blessing as odd as it is to say. I won’t pretend it doesn’t exist or that I can erase my experience. I refuse to squander it. Sometimes things happen for a reason, and sometimes they don’t, but at the end of the day, if you are satisfied with who you are and where you are going, then you never need to step backward for someone else’s comfort.

The reality might be that you are never going to return to pre-diagnosis health. But as long as you are OK with it, the rest of the world should be OK, too.

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17 Things I Wish I Had Done Before I Became Chronically Ill

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Since the onset of my illness, I have doled out advice to strangers. Middle-agers who are seemingly healthy, the banker, the drugstore cashier, people standing in line. “Buy disability insurance,” I announce as if onlookers are interested.

I have lived the hell of transverse myelitis for two years now, and so it seems right to give healthy people a few tips… things I wish I had done when I, too, thought I was untouchable.

1. Attend every social event. After symptoms set in and you are sitting in bed, you will wish you could crash that party! If you have the energy, go. Support your friends and family. Be in the moment. People will embrace you… when you get sick and re-re-re-schedule plans, some won’t stick around.

2. Plot your new work fate. You, striding around the office, engaging and smiling until the record skips. When you become unable to sit upright you’ll wish for time to rewind so you can consider, without pressure, your new work life with chronic illness.

3. Be physically active. You likely have a body not plagued by nerve misfirings and random, nonsensical betrayals. Take care of it! Do it for the patients who can’t do it for themselves! Be fearless on that mountain bike, park in the last row. Hunt for tarantulas like I did one summer! Become the best version of yourself.

4. Purchase a disability insurance plan. I mean it. Right now. Put this article down and take a moment to set up the required $35 or so monthly payment. When you get sick you will never regret it.

5. Pay down on bills. Your car, credit cards — make deals and settlements (if you need to). Plot your finances. Build your savings. Two hundred dollars may mean making the bills… or not.

6. Don’t burn bridges. You never know who you’ll have to call. So, get comfortable calling. You are not demeaned because you need a hand with household chores. You are a person requiring assistance. No one can make you feel bad about it… but you. Embrace this way of thinking. It’s vulnerable and powerful!

7. Get honest about your relationships. When you move from an I’ll-figure-it-out-myself-conquer-the-world stance to I-might-never-be-fun-again, you better get right with your significant other. Tell yourself you are worth it. That you seeking help is no different than anyone else. Similarly, recognize taking care of another requires dedication, empathy and compassion. Give your support system kindness… and a break.

8. Travel whenever, wherever. Hotel getaways, last-minute airline deals. Go! Now! Make memories in foreign locations, take pictures, hold onto moments. After you are sick, days and nights may blend together and turn into year-round cabin fever.

9. Practice a healthy lifestyle. Too much fat, processed anything, cigarettes, an overload of alcohol, a sedentary life — nix it all. Post-diagnosis, you will sell your soul to restore your health. Solidify new habits now. If you don’t get sick, all the better.

10. Align your spirituality. Get centered in your head and heart. When you are unsteady physically, spirituality permits you calm. This peaceful consciousness will soothe you when you cry for what you’ve lost and when you ponder unbidden changes. Explore the energies of the universe, or accept non-existence. Work to find closure.

11. Listen to your body. When you need sleep, go to bed. When you’re full, stop eating. When you sense a cold coming on, improve your self-care. Tune into your body. Are you nutrient deficient? Predisposed to genetic conditions? Learn your family history to manage risk factors.

12. Discover a new passion you can do sick or well. Do you like adult coloring books, macrame, reassembling engines, what can you do to prevent ruminating on your disease? Whatever you decide, be certain it’s compelling.

13. Prepare your responses. My inbox overflowed with info on supplements, shakes, elixirs, oils, everything. Too much information froze me. Be unafraid to tell people how much you appreciate them, and that you will reach out when you’re ready. Remember, people extend themselves because your sickness breaks hearts.

14. Figure out an anger outlet. We make plans, go to school, pick up hobbies, RSVP. Then illness uproots everything. The loss of authority is infuriating. Processing a new reality is taxing, so allow your complicated emotions without self-beratement. It will cleanse you.

15. Don’t use up your tears. You will have many hours of crying into your hands, your pillows, across the desk from your boss, on the shoulder of a co-worker, against the chest of your beloved. You will weep until your nose is stuffy and your eyes throb. A difficult diagnosis involves grieving. It’s OK to surrender to it.

16. Get household repairs done. Pre-illness, I dabbled in home improvement. Post-illness, I pick my projects thoughtfully, because if I can’t finish them, they become my fiancé’s responsibility… as has happened, when I’ve lied to myself about my limitations.

17. Laugh at yourself. If you take your condition too seriously, you might never know lightweight bliss again. This is your opportunity to practice levity, to appreciate hysteria born of pain. Your learning is meaningful. Chuckling while trying to puzzle out the new you awakens humor in others and makes life more comfortable.

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What I Lost -- and Gained -- Thanks to Transverse Myelitis

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My symptoms kicked off strangely, but fittingly around April Fool’s Day 2014 after a shower. I’d dried off, but my legs still felt wet in patches. Scrubbing at them with a towel didn’t help. When sensations waxed and waned over the next several weeks, I presumed a cervical injury had blown another disc.

Minor inexplicable bodily issues usually dissipate, I told myself. Until my fingers and toes started tingling. Vertigo hit, lasting seven months. My right leg spasmed, gripping me from the hip down merely from stirring in bed. It didn’t hurt so much as it was a rigor to withstand.

I lost my balance, my gait reduced to stumbling atop the planks of a listing ship. Co-workers supported me as I reeled along. A fitting analogy describing optical issues became eyeball murder party, reservations for one. Indescribable fatigue descended. I wished I could lie down — when I was lying down! I shook, and forgot information. My mouth burned, my throat iced and stole my breath.

I endured ride after ride in the MRI machine, countless blood tests, medication side effects, a terrifying lumbar puncture, bizarre-seeming procedures and physical therapy. Four months later, upon hearing the name of the culprit, I was foolish enough to feel lucky.

As of this writing, I have reinvented myself and my career. My relationship has proven to be unbelievably resilient. I am beyond proud of my superhero kids.

Hilary in her transverse myelitis t-shirt.
Hilary in her transverse myelitis t-shirt.

Before I could get to this state, I had to lose almost everything.

Categorized by the National Organization for Rare Disorders, transverse myelitis (TM) affects all ages, races and both sexes, and is defined as “… a rare inflammatory disease causing injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction…” Approximately 75 percent of cases are idiopathic. Symptoms mirror multiple sclerosis (MS).

The National Institute of Neurological Disorders and Stroke reports “…about one-third of people affected with transverse myelitis experience good or full recovery from their symptoms; they regain the ability to walk normally and experience minimal urinary or bowel effects and paresthesias. Another one-third experience only fair recovery and are left with significant deficits such as spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third experience no recovery at all…”

There is no cure.

My body attacked the myelin sheathing on my spine. Electrical signals traveling through that area are interrupted, eliciting symptoms striking at the height of the lesion and below. Once, my foot deadened within seconds, as if it had been asleep for 20 minutes! Three neurologists can’t tell me why my tongue burns as if zapped on a 9-volt battery, and I spark like a blown fuse. So every six months I hop in the scanning tube for funsies.

I have become uncomfortably numb.

I consider myself fortunate, having contracted subacute transverse myelitis. Acute TM can cause paralysis and even death.

An attempt to dig up research dollars yielded zero results because only about 1,400 Americans are diagnosed each year.

We lean heavily on support group members.

The Transverse Myelitis Folks (Blue Crew), a Facebook group (and extension of my family) run by Kevin Weilacher, provides encouragement, credible resources and life-changing positivity. Weilacher advises, “never take life for granted, because your life can ­change in an instant.”

Member Justin Hephner’s ability to walk again is attributed to his 40 years of martial arts study, arguing that the healthier a person is prior to onset, the greater their potential for complete recovery.

Liz Gardner, who has since has lost the use of her hands, had never heard of transverse myelitis, even though she’d worked in health care.

Neither had my mom, who has been in the field for nearly 40 years.

We love our community’s TM children fiercely, those whose mobility has been affected. Infants who can’t walk, toddlers breathing through a vent. When our kids make strides, tears wet our cheeks.

People call me courageous. I’m just refusing to be defined.

All I can do is meet each day head on, no matter what it brings — a relapse, a fresh lesion stealing another function.

Or my life.

Because of my new situation, I alternately run on 100-proof anger and determination, grasping hope so I don’t drown in sadness. I hate the new physical me, while also recognizing what I’ve learned from the experience. I am kinder, less-panicky and more accepting. TM made me vulnerable. I had no choice but to reach out. It was accept me or don’t.

My children were furious and scared, and we all yearned for a diagnosis while dreading to know the truth. Out of frustration, everyone cried and screamed obscenities during family meetings.  But we have surpassed those times. Now as my fiancé and I prepare to marry, our little clan knits closer together using the miles of road we have traversed.

I am at last good enough. Exactly as I am. Oddly thanks to transverse myelitis.

Follow this journey on Hilary’s website.

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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How I Went From ‘Pins and Needles’ to Transverse Myelitis in One Day

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New Year’s Eve was peaceful for us. We did the same as usual, enjoyed some snacks, a bottle of wine, and watched “Hoot’nanny” on TV. We were a little subdued as my father-in-law had passed away suddenly the day before. It was a big shock, particularly as I was with him at the time.

I went to bed feeling fine. I didn’t even feel tipsy, just tired.

I woke up New Year’s Day with pins and needles all up my right side. I thought they would go away and got on with my day, busying myself as much as possible to take my mind off them. They didn’t ease, so I turned to Facebook and asked my friend for tips on how to get rid of pins and needles, but nothing suggested worked at all.

Around 11 a.m. I decided to call 111. I just wanted advice because these didn’t feel like normal pins and needles; they were overwhelming and even numbing. After taking my history, they decided to send out an ambulance, which I did not think was necessary since it was only pins and needles. The ambulance came, checked me over and wanted to take me to the emergency room. “But I’ve only got pins and needles!” I cried, “I don’t want to go to the hospital.” So, they left me.

An hour later the pins and needles started on my left foot and I felt them rising through my left leg and starting in my left hand. It didn’t feel right. Sheepishly, I called my brother and asked him to take me to emergency care.

I walked in just before 3 p.m. It took ages to be seen. I went to the bathroom and felt a bit shaky. At 5 p.m. the nurse finally called me to a cubicle, but I couldn’t stand up or walk. While on the cubicle bed I quickly lost all sensation in my arms and legs apart from the pins and needles. I had no strength at all and was paralyzed.

I was taken for an MRI, but unable to finish the scan since I had a panic attack. The next morning, I was given sedation and taken in for another MRI of my head and spine. The doctors informed me they found inflammation of my spine and called it transverse myelitis.

It is a pretty rare diagnosis in the U.K. unless you have multiple sclerosis, which I don’t. I’ve had blood tests and a lumbar puncture to look at the spinal fluid, but so far I have no answers as to why this happened to me.

I spent 12 days in hospital, five of them on intravenous steroids.

The day after my paralysis I regained my right arm, then slowly afterwards my left. A few days later I started to gain strength in my right leg, and 10 days later, a little strength in my left leg. However, the pain is continuous and the pins and needles have not stopped, not for a second. Everything feels strange and I’m hyper-sensitive to touch. The symptoms affect me from the waist down, and in both arms. Never in my life had I felt so awful, but I continued to remain positive.

anne's zimmer frame used for walking and balance. two red bows are tied to it.
Anne’s zimmer frame used for walking and balance.

It’s been three months since my diagnosis and the most useful thing I’ve learned is patience. I’ve learned that everything takes much longer to do now than it did before: showering, getting dressed, preparing a meal, even answering the front door. Most of all I’ve learned patience in waiting for my recovery. I had hoped that I would get better quickly; when I was in the hospital, two to eight weeks seemed like a lifetime. Now I’ve realized the road to recovery is long and slow.

I am so thankful to have found the Transverse Myelitis Society; it has been the biggest support since receiving my diagnosis. I’d advise anyone who finds themselves with this diagnosis to contact them. It’s helpful to find others who understand what you are going through and can answer questions, others willing to share your journey with you and advise you along the way. Many people do not get diagnosed with transverse myelitis right away because it’s such a rare condition. Most general practitioners have never heard of it. You may get misdiagnosed initially; common misdiagnoses include multiple sclerosis or Guillain-Barre syndrome. However, there are tests for these which can rule them out. Sometimes the onset happens quickly, like in my case, or it can be a long and slow attack. It can be caused by a number of illnesses or infections, or it can be caused by nothing at all.

Currently I can no longer walk unaided; I need a wheelchair when I go out. I’ve lost the ability to drive, and everything I do takes much longer than it did before. But, with patience, I’m taking each day as it comes. I feel happier now that I’m home and with my children, even if I can’t physically do as much as I’d like to for them. At least I can speak to them, read to them, and cuddle them. Transverse myelitis is now a part of my life and always will be, even if I do improve.

Follow this journey on Raisie Bay.

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Lifelong Lesson I Learned From a Hurtful Comment

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Nearly three years ago, a girl I’ve known all my life said to me, “You know… You’ll never drive. You can’t do anything, really. That must suck to think about, huh?”

At the time, I was brand new to being in a wheelchair. I have transverse myelitis and had recently become paralyzed. I knew she was wrong, but I didn’t say anything. I just looked at her until she realized what she said had hurt me.

She has no idea what a big fire she lit in my heart.

She has no idea what I’ve done since that day. I’ve exceeded everyone’s expectations, including my own.

I have lived a much more fulfilling life since becoming paralyzed than I ever did before. Over the last three years I’ve done multiple 5Ks, swam in 15 feet water, laid out on the beach, gone on hiking trips and gone down slides and swung on swings at the park. I’m even learning to drive soon. I’ve been on TV and on the radio, I’ve swum with dolphins and I have danced more passionately than ever. I have laughed hard and loved deeply.

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Through all this, my mind always goes back to the girl who told me, “You can’t do anything.” Something she has now completely forgotten she said is drilled in my mind and motivates me every single day to get up and get pushing.

Two weeks ago, I went zip lining in Hawaii as part of my Make-A-Wish trip. At first, I thought I couldn’t do it because it would be too hard. It was difficult, but that didn’t matter the second I let go. I was free. Freedom — something I haven’t felt in years. Freedom is a feeling I can’t quite explain. It created a huge lump in my throat and caused happy tears. I did something I thought was completely out of question for me.

I am the first person in a wheelchair to ever zip line in Oahu, Hawaii.

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I can choose to let transverse myelitis define me, confine me, outshine me or refine me. I can also choose to move on from my struggles and leave them behind me. I won’t forget my past, but I can grow from it.

Next, I plan to try bungee jumping, sky diving or even rock climbing. I plan on living my life as best I can in spite of my setbacks. I promise you — at the end of my life, not one person will say I missed out on anything. Ever.

Without my Make-A-Wish trip, I never would have had the opportunity to visit Hawaii, one of the most beautiful places on earth. I could never have gone zip lining or swum with dolphins. How do you thank someone for that? For helping me more than anyone else could have?

I have grown so much as a person in just a few short months because of my Make-A-Wish journey. Before that, I was in a rut — I was in pain every day and I didn’t have much motivation. I did what I had to do and laughed often, but I wasn’t anything like I am now. Now, I’m still in pain every day, but I learned I can push through it. I can do it. I have so much motivation now. I have almost all A’s in school. I realized how much I want to help other people. I want others to feel the joy I do when I experience things I never thought I could do before.

My trip to Hawaii may be over, but in a way, it’s just starting. My journey is only beginning. I never really thought about the future because I was scared and I didn’t what to expect day to day. Now, I can’t wait for my life to begin. I’m excited to have more laughs and more adventures. I’m excited to drive, to go to college and to have a beautiful house one day. I will live, and I will be so overwhelmingly happy.

I still don’t know what’s going to happen tomorrow, but I can still live for today. Because every day I am alive and well is a great day.

This post originally appeared on Alex and Her Journey.

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How I Teach My Daughter About Self-Care

A while ago, I began emailing with a mother who had adopted a daughter with a different kind of ichthyosis many years ago. Her daughter is now grown, and she and I shared emails for a while about all kinds of different topics.

One of the things she said has really stuck with me as I care for Brenna’s skin each day: she told me to involve Brenna in her own skin care and health care as early as possible.

She said that her own daughter began “helping” with her Aquaphor applications at the age of 2 or 3, and just a few years later, could rattle off to the dermatologist all updates about her skin and describe any symptoms she was experiencing. This, she told me, really encouraged her independence and her self-awareness about how her skin felt, what care she needed for it to feel the best, etc.

I loved the concept, and more and more these days, I am discovering how right she was in this thinking.

Starting a few months ago, Brenna has been putting the lid on her Aquaphor jar as we near the end of her application. And in recent weeks, I’ve been asking her about her care before I do it: “Do you need lotion?” “Do you want eyedrops?”

I’ve been astounded and excited that she seems to be realizing more and more when her skin feels dry and when her eyes feel dry. I usually ask her several times a day if she wants eyedrops, and usually once or twice a day, she answers yes… even just a few months ago, the answer was always no.

Most recently, we’ve had to use a topical medicine on some areas of her skin. As soon as I carry her to her changing table, she’ll grab the tube of ointment, try to say “medicine” and gesture to the areas where it needs to be applied.

Brenna is also very aware of any pain, and if she is whining for what seems like no apparent reason, I will ask if something hurts. She answers “Yeah,” I ask “Where?” and then she’ll point to her hands or feet or to her g-tube site if they are causing her pain.

In the same way that we teach independence to children by training them to use a real cup instead of a sippy cup, or teaching them how to brush their teeth by themselves, I want Brenna to learn early on how to care for her skin. Because I think this will open up a lot more opportunities for her as she grows up – to participate in more activities, to attend more events and even to travel more.

I know we will feel more comfortable as her parents letting her go to a friend’s house or a birthday party if we know that she will be able to tell an adult if she doesn’t feel well or if she needs something… and I know other parents and family members will feel more comfortable with being responsible for her if she has an active role in her care.

Of course I know that general education will be necessary in a new situation or with a new person, but teaching her early to care for herself and to be aware of what her body needs will only foster independence and minimize reliance on other people to care for her.

If she comes home really dry from a friend’s house, I want the burden to be on her to ask for lotion, not on her friends’ parents to have to pester her to apply lotion. If she starts to feel unwell while playing outside on a warm day, I want her to be able to recognize this feeling and know how to cool herself off.

Our dermatologist “warned” us that Brenna will probably go through stages as she gets older – sometimes she will take a very active role in her skin care and look forward to baths and lotion… but there will also be stages where she fights it. (Like when I know I’ll feel better if I don’t eat a half bag of Doritos… but I fight that and down those chips anyway.)

Seeing the early stages of Brenna’s interest in caring for herself is exciting… and when I step back and write about it, I realize my baby has really moved into the true toddler stage. Learning to eat has been a huge step toward independence for her, as she loves to self-feed, and I think she is discovering how proud she feels by doing things all by herself.

This post originally appeared on Blessed By Brenna.

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