Back before it turned out Lance Armstrong was taking steroids, when everyone still loved and adored him I read his book and he mentioned something in the book that always resonated with me it was that ” Cancer either brings you together or tares you apart.” He was referring to his first marriage and while I was just a child when I read that it resonated with me for some odd reason, but years later I would fully understand what he meant.
While not married to Matt at the time when he had his stroke I became his care taker, which to everyone whom has ever taken on that role you know how tough it is. I thought the role was temporary and for the most part it was, but I think the thing I never actually fully comprehended was just how much Crohn’s Disease played into my care taker role. In so many ways that would be the reason why for most likely the rest of my life I will cycle in and out of the caregiver role. I don’t think there is ever a way to be prepared for that role especially not in your 20s, but when it falls upon you out of the blue you step up to the plate and embrace it, as I did when I needed to.
However, I think few people really understand what the role means and encompasses and how little support there is especially for young caregivers. I believed the universal truth we all tell ourselves, at least in the United States, that we wont be caretakers until we are well past the heat of our lives. In my experience for older people there were a wealth of resources but for someone under the age of 50 not so much. There was no literature on how to navigate taking care of someone who is recovering from a stroke while working, going to school, trying to have some semblance of a social life and attempting to stay in shape. Not to mention that navigating the treatment world is a full time job and the hardest job I have ever had.
I would like to shine some light on what it means to be a caretaker. There are doctor and therapy appointments intermixed with hospital stays, treatment plans, research on the best doctors and the best and closest hospitals wherever we are and that means everywhere even when we are in a jungle in a developing nation and sometimes it means not going somewhere where there will not be access to good health care. It means researching the newest technologies and treatments to help those with chronic illness cope, holistic v conventional medicine or a blend of both? All of these things while working, going to school and having friends ask why you are not going to happy hour once again.
When my partner, Matt, basically hit the stroke jackpot for lack of a better term and had both an ischemic and hemorrhagic stroke I could never have imagined how much our lives would change. We would learn it was all caused by undiagnosed Crohn’s Disease, an autoimmune disease and one of two forms of irritable bowel disease. You never are cured per say from Crohn’s as it is chronic but you can go through periods of remission. The duration of which varies from person to person.
In a few months time I had learned that the person I was falling in love with had a long road to recovery from his stroke and also had a chronic illness that we would both have to learn how to navigate. In the beginning when I first learned about our new normal I though OK I’ve got this and sometimes I did, but on most days I existed somewhere between surviving and debating running away and never come back.
Matt had survivor and IBD support groups I had sorry expressions, empty sympathy and a whole lot of people pull away from me because they just did not or could fathom Matt and I’s life and did not want to. It was as if by not acknowledging what I was going through they could pretend it was not happening and I was just somebody who did not want to talk to them anymore when in reality I was just drowning and at the end of the day could not fathom picking up the phone to hear about anyone else’s life. I just wanted to get through the night to make it to the next day.
In many ways as a care taker the stroke recovery was the easy part because it had a natural ending in which Matt would either begin to get better or he would level out. We were extremely blessed and lucky that Matt did start to show signs of improvement and was able to attend some of the best therapies in the country. He has made almost a full recovery which is a pure miracle that we are thankful for every single day and honestly he continues to get a little bit better everyday almost 4 years out.
However, the part that has not been very tough for both of us is managing a chronic illness and for me figuring out how to be a caretaker to someone with a chronic illness.
Last year around this time Matt experience his second flare and I was catapulted back into the role of caretaker. I can honestly say that there was nothing that could have prepared me for it. I was at a juncture in my life where it felt like we had finally made it out of the woods after a long, arduous journey and I did not want to go back, but as time went on I knew where we were headed and if I am being honest there was a moment where I resented it. It is hard to shift the mindset from hey were young people finally getting life figured out to hey my partner is in the hospital and when he gets out I will have to be on high alert to the fact that we may need to go back at any time. I think it was the first time I allowed myself post acute crisis of the stroke to process the seriousness of autoimmune disease and what it honestly meant to have a partner with a chronic illness.
I have learned a lot since then and in many ways embraced the role but that does not mean there are not days when I wake up wishing I never knew what an auto immune disease was. So for all of you out there young or old in the caretaker role I feel for you and know that you are not alone and if you ever want or need someone to talk to or bounce ideas off of I am here.