Almost four years ago, I woke up and could not feel my body. What would follow is a diagnosis of a rare autoimmune disease that would catastrophically change my life. The immediate onset of this disease, took away things I had previously taken for granted: my certainty in every step, my freedom of mobility, my self-esteem, my confidence, my career, my social life, and so much more.
I’ve come a long way through therapies, rebuilding where I’ve felt depleted. I’m finally at a point where I can safely set goals for independence and self-reliance, but that starts with a humble ask: help from my friends to support my desire to help me pay down some 20k in medical debt, and hopefully, help me procure/purchase a car with adaptive hand equipment that will enable me to drive once again. Regaining my ability to drive will allow me to leave my home, seek out work, see friends, grocery shop, and more.
August 14, 2021
I began a part time job last week! I am currently working 14 hours/week, as a receptionist at a therapy/psychiatric office that specializes in addiction therapy. So far I am absolutely LOVING it! I have already been offered more hours, and even a position as a therapist, as I have my Masters in social work. This is an incredible feeling, and although my body is exhausted and sore, my soul is energized simply by being back out in society.
2020 was a terrible year, all around. For me, it wasn’t as hard as it was for everyone else. I’ve been “quarantining” since I became disabled. Except for doctor appointments, and a very rare occasion, I don’t leave the house. I have essentially been homebound for 4 years. Remember the first time you went to a gathering, or saw a friend after quarantine, and how good it felt? Imagine now, how good that reunion would have felt if it had been 4 years, rather than one we’ve just gone through.
That energy pumping through my veins has the most uplifting and hopeful effect on my soul. It calms me, and lets me know that I’m going to be ok. My body may fail me again, that’s true. How will I deal with my quarantine then?
I don’t have any of the answers, let alone ALL of the answers. All I know, is that I never in a million years, thought I would be so happy to answer a phone, as I am at my job. Going from not being able to get myself dressed without crying and needing help to working 14 hours a week, had given me a bit of perspective on that one.
Currently, my parents are driving me to and from work while I raise funds for my own transportation. I am going to a dealership this week. My mom and dad have decided to go down to one car, in order to help me get a car. If my mother gifts me her car, I may be able to trade hers in, with some money from this campaign for something that suits my needs (SUV), can be retrofitted, and can fit into my budget. I wouldn’t even be able to think about going to dealership if it weren’t for all of you.
So much of this is due to all of you. I am doing my best to honor you and your support, by working to be the best me I can be. It’s a big job….but….I’m working on it! ✌️
July 27, 2021
Infusion day! Thankful for good medicine, and the people who know how to treat what ails me.
I have been thinking a lot about the past 4 years, as I near the anniversary of when this all began, August 6th, 2017. Four years is a long time. I must admit, I’ve been quite melancholy dwelling on how I feel I’ve lost 4 years of my life. The thoughts of what could have been, where I could be now, how hard it will continue to be as I work to re-release myself in some capacity back into the wild, can be intensely and solemnly overwhelming. I feel as though I am still grieving that loss, and I’m not quite sure how to reconcile all of the “could have beens” with where I am now.
I am incredibly excited about what I have accomplished and overcome since this began. I have found friends in the most unexpected places, I have seen my family come together to give and do anything and everything they can to support me. I feel as I have morphed into feeling more like myself, and knowing exactly who that is, than I ever have before. I have learned lessons of compassion, vulnerability, and strength from within that I never knew existed. I’ve learned that people can be downright cruel, rude, and have a complete lack of understanding as to what it’s like to maneuver this world with a disability/chronic disease. I have felt judged and pitied. I’ve felt like an afterthought. I have made and allowed myself feel emotionally weak, hopeless, lazy, incompetent, and unworthy of advocating for. And, I have found that being disabled/sick can be an extremely lonely existence, no matter what online community you build and/or belong to.
In spite of all of the negatives, I am still more thankful to have met the woman I am now, than I am heartbroken that this has happened to me. I wouldn’t have met her, if I had not been thrown this curve ball, and for that, I’m grateful. This doesn’t mean I’m done mourning the loss of “what could have been”, I’m sure that will haunt me at different times of my life, in different ways. Grief is like that; it’s not a lateral process through the stages.
What will help me combat that grief though, is this online community, working towards rebuilding a life the way I desire, and knowing that I am emotionally stronger than I ever have been before. I wouldn’t have learned how to be so strong and steadfast in my desire to do more with my life, if I hadn’t experienced what I have. No matter what “could’ve been”, finding myself and learning to make it work no matter how hard it is, will always make it worth it. ✌️
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September 4, 2021
You rock, Toomster! Love and miss you.
Kristen Miller Gavazza
September 3, 2021
August 18, 2021
Proud of you Kara! Hope to see you driving on the road soon (so I can make obscene gestures at you!) ;-)
August 5, 2021
TO Kara Toomey, You shared your story with me one day in the office on Mill Street. I was impressed with your courage in pain, strength and inspiration to carry on through very, very difficult obstacles placed in your path. It is my hope that science will someday find cures for all diseases, especially catastrophic ones. Warm regards, Marcia Dunham (formerly of All American Self Storage)