“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” -- Susan Sontag
I passed a few major milestones in the past few weeks. I successfully took the train to Chicago to teach at the university. I managed to get around okay. I was tired, very, very tired afterward. I also regained my driver's license! I joke that the silver lining in having had a stroke is that I get to feel 16 again. I will use any excuse to drive. I love the freedom! While I am grateful for all the folks who offered me rides to and from rehab, but I hated feeling so dependent. I eventually started taking cabs, just to have a little sense of independence.
The hardest part I face now is being respected by my family, for what I've endured and to have them accept that I've been permanently changed by the event. I have worked hard to regain my faculties. I dilegently practiced all i was told to do in rehab which has helped. But my brain doesn't work the same. They don't hear / see the difference, but I know it's there. When I ask directly for help. I rarely get it unless it is convenient for them. Well, excuse me for living, the stroke hasn't been exactly convenient for me. I try to be pateient knowing that a severe illness effects more than just the patient. But that's such bullshit. I'm as a result forced to carry the weight of my illness and disability in addition to eveyone else's issues with my illness, as well as their own fears. I've begun to call the left side of my body George as I feel like a line splits me down the middle with my right and left feeling distinctly diffferent. The only thing that relieves my sense of the divide is Pilates and Thai massage. If you are a caretaker or family member reading this blog, please remember that the patient doesn't want to ask for help because they know they are being a burden, so when they do ask for help, for goodness sake help them! It took them a lot to just ask, not just emotionally, but they have to try connecting a few zillion neruons to get the words out of their mouth, let alone to make their mouth move.
It's now 3 weeks since I started this post. I hesitated to post it as I don't like to focus on anger. But anger there is. My life is dramtically different. I used to have a very full and busy life which was stressful at times, but which I really enjoyed. i am sick of people saying that I am better off now. How rude and flippant. It takes everything I've got to make it successfully through a day. I have a fatigue that can zap me at any minute. I would rather spend my day doing what I enjoy rather than hunting down a new doctor. Because of the anger, friends keep suggesting I see a therapist. Well back to that previous sentence. I don't want to spend what little of my day of which I have energy to enjoy by chasing down a doctor. If you don't want to hlisten to me, then just say so or why not just change the subject! Once again, you make me the one having to look out for you and that prevents me from focusing on myself and my healing process.
Yesterday was really the icing on he cake. A woman at a coffee shop noticed me limping a bit I was tired and when I tire, my left side gets weaker, so I limp a bit. No biggie to me. I'm just glad to be wakling and talking. She had the gall to ask me why I was limping. I told her the truth, that i had had a stroke and was feeling tired. She and her boyfriend proceeded to tell me that it was all due to me being a vegetarian. What the fuck.?! Excuse the language. But really people? I asked if they were doctors. Of course not. Doctors don't know everything. Well, clealrly they know zip, let alone how to mind their own buisiness.
This is my last survival update for a while. I started them as their was nothing out there for young patients. Eveything was geared toward those in their 60's - 80s. I'm not retired, or even close to it, I don't have a husband to support me. This is it. Me and only me keeping the balls rotating in the air. I'm now going back to craft and art. Thank you for reading.
PS - My 40 year anniversary day for suviving chidhood cancer is August 4th. I was given 3-6 months to live at the time. HA! I'm thinking that a float down a local river might be the best way to celebrate living. :-) And now for some chocoalte! We vegetairians need our antioxidants!