Grieving who I once
Most of the time when we think of grief, we think of the immeasurable loss and ache of losing someone we love. We never get over that loss and, although it may dim a bit throughout the years, it never really goes away. It sticks with us to the end, and leaves us forever changed. Since grief is most often associated with the loss of a loved one, many fail to comprehend the tremendous loss experienced by those with chronic illnesses and disabilities.
As someone with multiple health conditions which include severe breathing issues, and intense chronic pain, I know what it is like to experience the heartache that comes with the loss of who I was in the past and my expectations for the future.
For me, the grief surrounding my chronic illnesses has seeped into my everyday life, and has challenged how I think and interact with the world. The last ten years have been a struggle and have become worse over time. My issues with breathing and pain have become a central part of not only my life, but also in those closest to me. Thinking about these losses has inherently lead to mental health challenges like depression and anxiety.
If you would have asked me in my 20’s what I thought my future would look like, it would revolve around having a great job, getting married, and having kids. Instead as I entered my 40’s this past year it revolves around multiple medical appointments, hospitalizations, surgeries, and therapy. Most of the time, I am not able to do the many things I was able to do in the past. Even seemingly simple tasks like taking a short walk, or going with friends to dinner needs to be carefully planned out around my triggers, and even then I usually cannot attend. If I go to a meeting with friends, or even to the movies, I know that the good day will most likely lead to a few days of increased symptoms. It is so easy to become bitter about life when you can’t do the things you love with the people you love.
As much as the grief and emotion can cause me to live a life that is often times lonely and isolating, there are still things to be grateful for. I find that the love and understanding of those closest to me, my faith, and my brother and sister warriors who deal with this grief as I do makes things a bit better. Yes, we will all continue to grieve our former selves, but most of us also have people who will meet us where we are and help us see the light even when we feel surrounded by total darkness.
*My amazing group of friends from all over the country will share their experience throughout my blog posts. I hope it will help knowing that others are going through similar situations, and that we can’t do everything on our own.
Brigette Thornes from Michigan
For me, the connection between “disability” and “grief” is complicated because I’ve had my disability my entire life (a mysterious muscle condition that doesn’t even have a name) but one time period does stand out strongly, and that’s when I left elementary school. It wasn’t until it was time to enter those tween and teen years that I realized I had been hoping I’d be able to have the “full kid experience” someday. This year I couldn’t play tag on the playground, but maybe next year, I could. This year I couldn’t be in a jazz dance recital Karyn’s Dance Place, but maybe next year I could. There wasn’t going to be a next year. My childhood was coming to a close, and I wasn’t done with it.
Those very early teen years were very difficult. I went from having so many friends that girls would fight over who got to sleep next to me at my massive birthday parties to realizing I didn’t feel comfortable having a party because I didn’t talk to anyone anymore. I was not ready for this stage of life, and I completely shut down. I wanted to be a child again, to experience and feel everything I never could—physical freedom—while being blissfully ignorant and taken care of in a way that only children can be. I thought that not wanting to grow up just meant I was a loser. I didn’t understand that I was actually experiencing grief.
Hindsight is 20/20. After hearing stories about my friends’ childhoods, after seeing what kids go through in my line of work as a therapist, I came to realize that even though my childhood wasn’t “normal” that it was still idyllic. I had a stable and supportive home life, more toys than should be legal for any child, summers in the backyard pool with a house full of family, and like I said earlier, massive birthday parties. I was never bullied, never hurt by anyone. I never had to deal with losing a loved one. On a day-to-day basis, I was pretty happy. And a lot of that feeling I wanted to have—that freedom—had to do with my mind. (Yes, my childhood was idyllic, but I was one neurotic kid!) Truthfully, if I could go back and be ten years old again for a week, I’d do it in a heartbeat.
But while this is true, it’s also true that my grief as that kid leaving elementary school was very real and valid. All the big and small things my disability has made me grieve for are valid. I’m still actually really, really sad that I could never be in a jazz recital performance at Karyn’s Dance Place. I’m sad—and angry—that I couldn’t wear cute shoes with my leg braces as a teenager and still struggle to find them. (And the shoes must correspond with the outfit, so that limits what you can wear. And what you feel you are “allowed” to wear actually matters a lot—but that’s a whole rant in and of itself!) I feel grief over not being able to fully throw myself into experiences because I was and am afraid that I will literally fall down. I can’t imagine ever feeling safe enough to travel more than two hours away by myself.
I could go on and on about this forever, so I’ll just leave it at this: I think grief can make you really creative—creative and empathic. Because my life couldn’t give me everything I wanted and needed, I created an elaborate fantasy life, which led to developing a love of fiction and storytelling. I’m convinced that if everyone had a really engrossing novel they were working on that depression levels would plummet. Grief also makes you really empathic, and empathy is a superpower. It might not feel that way when you’re really young, but then you reach the age where people want to be real and connect and be vulnerable. Have you ever gone to someone with a problem and realized they’ve never had any type of adversity in their whole life? Those people can be fun to shop with, but at the end of the day, you want to talk to the person who’s dealt with some shit. And then, in a roundabout way, the thing that was keeping you from connecting with other people becomes the thing that actually helps you connect.
S.B. from Florida
I found out when I was 21 that something wasn't right with me. I did everything that I knew a dr would ask me to do. Rest, loose weight even changing my diet. Years later I found out I had fibromyalgia and other autoimmune disorders. I felt my life was over. I changed how I did everything in life. I had to be overly aware of my activities, because I knew how terrible I would feel afterward. I continued to work but l had to change my work environment. I couldn't work in a high paced, stressful work environment as a cna anymore. It crushed me. I felt as I had before like my life was over. I was angry, embarrassed, and defeated.
Why did I have to be so young and go through this. Now in my mid 30’s, my health has gotten worse, and I can't do as much as I once did. I take more meds than most elderly people I know in my life. I grieve for a life of wanting to have a family and kids. But I can hardly move most days, and I don't think it would be fair. I grieve for a life full of random activities without having to pay for it later on with all the pain, exhaustion, etc.
I'm thankful that I can still work in the medical field doing hospice home care. But I worry how much longer I can do that. A part of me grieves for that day whenever it may come. But for today I'm grateful for the moments I do have. If I could do it all over again I'd live my 20s more freely and not so focused on my health, when I felt better and wasn't as sick as I am now. But now at this stage in my life I do live for the greater moments when I'm blessed to have them.
Barb (MI) written by Stacie Briggs
My friend Barb knows what it’s like to grieve the life she once knew. She was diagnosed with Glaucoma (a disease that effects your optic nerve) in 2015 and has lost most of her vision (all in her left eye , and partially in her right). Her world instantly changed, and she had to adapt to a new way of living.
Prior to losing her sight, Barb was an extremely active person who enjoyed things like power walking, weightlifting, and Zumba. She had to give up not only that active lifestyle, but also most of her independence. She had to relinquish her keys, because she could no longer drive and had to rely on others for transportation.
In order to gain new living skills, she attended a month long camp comprised of people who were blind and had low vision. This camp allowed her to not only gain skills, but also be with a group of people who understood what she was going through.
Not only does Barb have low vision, she has physical pain as well, which makes mobility a challenge. She uses a cane as a mobility aid that also helps to keep her balance. She also deals with the mental challenges that accompany her disability, and has gone to therapy in order to learn various ways to cope, stay positive, and keep herself mentally balanced.
Barb’s life is tough, and much different than the one she imagined for herself, and although she will always grieve her past, she is thankful for the sight she does have, her faith in God, the family and friends that support and love her, and a job in which her employers have made accommodations for her.
Sabrina DeCoito-Alexander from Ohio
Grieving the loss of your former self due to chronic illness is a profound and unrelenting heartache. It's not just the physical decline that hurts, but the shattering of dreams and the future you once saw so clearly.
As a mother, this grief cuts even deeper. You had envisioned days filled with laughter and joy, taking your children to the park, exploring the wonders of the zoo, and sharing in their boundless energy and excitement. Instead, you find yourself confined to the couch, watching them live their lives from a distance, like a spectator of a TV show in which you no longer have a role. The pain of seeing them grow and experience life while you are unable to join in is a constant, aching reminder of what chronic illness has stolen from you. Each missed moment is a dagger to the heart, a bitter reminder that the dreams you cherished for your motherhood are slipping away, leaving behind an overwhelming sense of loss and helplessness. The future you had dreamt of is now a distant, unattainable hope, replaced by the cruel reality of watching life's most precious moments pass by from the sidelines. It's a grief that never fades, an unending mourning for the life you can no longer live and the dreams that remain just out of reach.
