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back pain, chronic pain, depression, fibromyalgia, guilt, health, life in general, mental illness, miscellaneous, poetry, psychology, social work, spinal fusion, uncategorized
I opted for something a little more poetic to express the intensity of the guilt I feel about what this has done to my life.
I am drowning in an ocean. Every time I get my head above water and take a breath, the current sucks me back in again. Guilt; never-ending, all-consuming. No matter what changes I make, I am reminded of my failures time and again.
Living with a disability means I cannot be blamed for our misfortunes, that it is not “my fault,” and yet everything that goes wrong can be traced back to me. Although not “failures” by definition, I am constantly wracked with guilt. In the same way my body is constantly battered with pain, so is my mind with guilt. It pulls me under every time I try to breathe. Every time I try to move up in life, the guilt pulls me back under into the abyss.
I am trying to DO, but my body betrays me. I started working freelance, a few hours a day, my body protests. I was the one who had to stop working because I got hurt. I was the one who financially screwed us seven ways from Sunday. Work makes me feel like I am participating in life, instead of just letting it pass me by, it makes me feel like I can breathe. But just as I feel life coming back into me, I am pummeled by another wave of guilt, and into the abyss I go. Like an alarm that is set to go off every hour, I am repeatedly and constantly reminded that had I been able to keep working, to keep contributing, I would be living in a house right now. Guilty.
I try again to swim, harder, faster. I sign up for acting class. I am happy, excited, there is a hint of life in my eyes that had long gone, when I am once again choked by guilt. Why am I spending money on something for myself? Why am I taking and not giving? Why am I trying to get more education when I already possess a useless master’s degree which my mind wants to make use of, but my body cannot? Guilty.
How can I breathe? How am I supposed to get ahead of the currents of guilt? Every conversation, every argument reminds me that my life is my doing, my debts, my health, mine, mine, mine. And as I think this, one more wave pounds me, forcing me under. This has made me selfish and it has made others suffer. I am the one in pain, but I do not suffer alone, and so my husband suffers for me. He suffers for the pain and the depression, for the failures, for the guilt.
I can’t get through a day without being pulled under, without seeing the pain my disability has caused. In the same way my body screams at night from having sat too long, stood too long, moved too much, my mind is screaming with guilt that it is all my fault…and so I go with it. I stop swimming with the current, feel myself get sucked under…but damned if I don’t fight to get back to the surface. Why? Why don’t I just give up? If I knew why I fight when I desire nothing more than to quit, I would know why I am still here.
And so, every day I am struck with guilt, I fight to breathe and I swim against the current, however futile it may be. I hope to be free of this one day. I hope to understand what peace of mind is. I hope to finally take a breath of air.
You are surely in one of the worst phases, mentally and emotionally. BTDT Have you applied for Social Security Disability? I hated doing it, but on doctor’s orders I did. I am multiply disabled (really through their heads spinning), one disability by itself didn’t meet requirements. After rejection, Got a lawyer, eventually won, got Medicare. Sounds like your case wouldn’t be as complicated. Have you seen a psychiatrist for depression? I do and take 2 antidepressants that help with the pain as well as the feelings you describe here. Talk therapy with someone who knows disability/chronic pain helps and you might find someone who doesn’t charge. My church offers 3 certified counselors. I’m much older than you, but I’ve also been on this road much longer. Guilt is sometimes overwhelming. We make do with less and it’s not the end of the world. Your vows were “in sickness and in health, for richer or poorer” unless they’ve changed in 37 years since we said them. ‘gently and slowly is more likely to help than swimming hard and fast (free use of town pool available to me). I could ramble on about ways to save, Let me know if you’d like more info. Have you tried counselling part time as a chronic pain counselor, explaining you may have to move around and why, or are you not licensed for private practice? Please get in touch if you just need to vent to someone who understands or if you’d like the $$ saving advice I offered.
Janet
Thank you for the information. I am in a bad phase, but I think its par for the course. I have been through worse. This piece was just more poetic than my normal writing style because I was in a poetic mood. I spent several months in talk therapy with a chronic pain specialist last year after all this and it was a waste of time and money. Being a therapist makes therapy v. difficult. This is my therapy- I write, I express myself, try to help others. My insurance is also pretty crappy until I meet the deductible and with the high cost of my health right now, I found it to be throwing out a lot of usable dough. I am not licensed to private practice, I need to be supervised by an LCSW. In time I would like to go back to counseling and chronic pain would be an area of expertise, however I am not able to handle that at the moment, not that I don’t feel enormous pressure to do so, though. I don’t qualify for SSI at the moment for reasons I won’t go into on a public domain, but it may be possible later on. I do not take anti-depressants as I have tried them for pain and mood and my body cannot tolerate them.
I feel your pain. I always felt like I was on a merry-go-round from one infection to another, from one reaction to another with no way off. I was just spinning and spinning. I know the guilt. I have chemical sensitivities, food allergies and mold allergies. I feel bad when “we” as a couple can’t do something. Not because my husband can’t or because we have other committments, but because I can’t. I can’t go into the restaurant because of chemicals, chances of mold, trying to work around food and sulfite allergies. I have had six sinus surgeries, a hysterectomy (mold caused), IV antibiotics and taken pain pills just to get out of bed in the morning. It is not fair that we should have to live this way and deal with the guilt that it is all our fault when it truly isn’t.
I began seeing a therapist and journaled. Boy did I journal. There is a lot of my journaling that will be in my book. I, too, signed up for and was granted SSD and Medicare. I have finally been able to sew again after years of not being able to look at a pattern shape on top of a printed fabric without having an anxiety or panic attack from over visual stimulation. I buy fabric online when I can find it on sale and make little quilts to donate to the children’s hospital. It gives me a sense of doing something for someone else.
Why do you spend money on you? Because it is for something that you enjoy and can do and you need to have some happiness in this world! There is so much in your life that you cannot control and this is something that you can.
Why do you keep on fighting? YOU ARE A SURVIVOR! YOU REFUSE TO GIVE UP DESPITE ADVERSITY! I applaud you for fighting. It is not an easy thing to fight so much. Don’t be so hard on yourself. There are many of us out there.
Virtually every sentence of this echos my own thoughts and feelings. When I got approved for disability it was a huge relief (there is absolutely no way that my body would allow me to work) but it was also somehow devastating. Realizing that my thoughts and dreams for my life were gone and that I was now destined to a future filled with pain sent me into a sort of mourning period (which I’ve been in and out of since the moment I knew my illness was degenerative and incurable). I feel guilty for being such a burden to my incredible mom, both emotionally and financially, instead of growing up and getting out into the world I’m stuck at home sometimes unable to even properly care for my self.
We go through so much on a daily basis physically and emotionally. I do not think you’re selfish for spending money on something that makes you happy. When I read that you had decided to do that it put a smile on my face and made me think; good for her!!
Hugs to you.
Another profoundly accurate metaphor, and it hits at a poignant time for me. I’m deeper under than I’ve ever been, not sure I can get back to the surface. :/ This was healing, though. At least I’m not alone here.
I know how you feel, this has been a trying several months for me. I am taking steps to improve things, but it feels like every step I take, my body comes back at me to take me down!
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