My Chronic Illness 'Wishlist' This Holiday Season
I recently heard someone say that when you pass from this world you take nothing with you but your soul and the memories you have shared with those you love. Some people may agree or disagree with this statement depending on personal beliefs but one thing is for certain, material possessions do stay back. We have all heard various sayings that are similar to this at least once in our lives. However, during the holiday season it’s easy to forget what’s truly important in the midst of all the hustle and bustle of gift giving, receiving, holiday parties and events. By no means should we not all be building our empires, be go-getters, following our dreams, acquire wealth, a nice car, home, job, success, whatever it is that is a goal of ours. At the same time though, don’t forget to have balance.
As a chronically ill young woman, balance can be hard to achieve though, when life is looked at through the glass of constant doctor appointments, medical procedures, medications, trial and error therapies, disability and social isolation. I can’t say I don’t treat myself to a pair of expensive shoes, being that since I have arthritis, I have no choice but to indulge in good quality footwear. I also would like a nice home, my dream job and a car, to name a few of the material things. I admit I have always wanted luxury in all aspects of my life; I strive for the best. Isn’t this something we all want for ourselves and our loved ones after all? To be safe, have comfort and not live paycheck to paycheck?
After years of illness, people’s questions around this time of year as to what I want for Christmas or what am I getting people had me reevaluating and thinking what it is I truly do want. Do I really truly want all these things? Yes, I can buy myself something or receive a gift and it makes me happy, but a deeper sadness lingers within, burrowed deep inside that no material possession or money could seem to buy. It’s as if I’m trying to live the American Dream, within a dream.
So I sat and thought and just like 12 days of Christmas, I came up with my own version of the five things I have been wishing for this holiday season, the New Year and beyond. Things money can’t really buy and, if it can be bought, at what price?
1. Good health and a cure and to go into remission from my rheumatoid arthritis.
It is a horror film where you can see what you want through the looking glass and be so close you can smell, taste, touch and see it, but then it disappears. That’s how it feels to have a chronic illness with no cure. Good and bad days occur, but I’m waiting for when the good days never, ever end.
2. Acceptance of my physical body in the here and now.
We can’t change the hands of time or re-write the past of what we could’ve, should’ve and would’ve done differently. We do the best we can with the resources we have at the time of diagnosis. I often wonder if some other treatment could’ve helped me better or if I missed something. Something that could’ve kept my body the way it used to be pre-knee replacement or joint damage in my hands and elbow. Often I look at pictures and get nostalgic because I won’t feel that way ever again. Once we learn to accept ourselves we then in turn truly love ourselves and can find that same type of love in return. Meditation and prayer helps me but more work needs to be done.
3. Real, true, supporting love.
Dating while chronically ill has its challenges. I have yet to find my person, my forever penguin. At each stage of my life dating was different because the nature of my condition was different. Now that certain things have progressed for me, it is a very daunting idea. Will someone really want to date me? Will I be a burden? Will they get sick and tired of me when I can’t do things a healthy girl my age could do in a split second? This is why I don’t settle and am waiting for that person who is the one for me. I’ve had my fair share of disappointments so I am hoping I can find this someday.
4. My own biological children.
In no way am I against adoption and would consider it, but the experience of having and carrying your own biological child with chronic illness can be a feat I don’t even know if I could do physically. Some day as I can’t even take care of myself let alone another little human wanting 24/7 attention. This by no means is being negative but it’s a reality many woman with chronic illness have to think seriously about.
5. A normal social life.
I love my doctors and other health care providers. I am truly appreciative of all that they do and continue to do to help me with my healing. They are the best. However I see them more often than I do friends, family members, etcetera. The term social outing has found itself lost at sea only to be coming in with the waves of when chronic illness is doing good. It’s only then do I come up to the shore to breathe in life and laughter. I am a person who loves to try new things, go to new places and just go out in general. Chronic illness in a way clipped my wings. Where I once was a butterfly, I then turned into a cocoon, then a caterpillar. It’s like I was Benjamin Button. That’s what chronic illness does. It transforms you and pushes you through various phases whether you like it or not. I despise my illness and I feel it’s a curse but at the same time a gift. A gift because it’s transformed me into a new butterfly, bigger and more beautiful than ever and has given me purpose. Friends and family have come and gone, and as I navigate this new me, I hope to be out laughing, carefree and having fun more often. I’ve started this lately and am proud of myself for pushing myself out of my comfort zone. When ill you can get used to staying inside all the time or being uncomfortable while in pain in social settings. I often find myself trying to cover up my flaws with my clothes, leading to more stress and not wanting to go out at all.
Whoever is out there this holiday season with chronic illness who may be thinking or feeling the same way, the most important thing we can do is to try not to focus so much on what we lack and want or always trying to be positive – because let’s face it, we are human and sometimes life gets the best of us. It’s OK to feel and then let it go. Writing down your feelings, fears, the unknowns and what you want to bring into your life can be cathartic, especially during this time when we enter a new year on a clean slate, with fresh starts and a whole brand new 365 day calendar. Surrounding yourself with positive people who can bring you out of the harsh realities of daily living with chronic illness and ground you when you find your mind going in circles can help tremendously.
A beautiful jewelry and watches line I found on Instagram called Bryan Anthony’s said it best in one of their necklaces labeled “Phases.” ‘’Whatever phase you are going through, remember it’s not permanent.” The description of the necklace goes on to talk about how life isn’t about staying in the same place or in other words being stagnant, it’s about the fluid movement from one stage of our lives to the next.
Oftentimes those of us who are chronically ill experience not so fluid movements but we end up reaching where we want to be eventually. The sun will shine through the dark clouds again and when it does look up, smile and be proud of how far you have come. Bryan Anthony’s phases piece also stated, ‘’You need each phase to transform you into the person you were meant to be.” For those wishing upon a star for what money can’t easily buy this season, love yourselves where you are now in whatever phase or stage you may find your lives in. It is only then will you have inner peace.
Love, peace and happiness to you all.
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