Regular readers already know about my daughter’s blog, I Pick Up Pennies. They probably also know about her 19th year, when she nearly died from a rare neurological disease.
Since then Abby has gone through a lot of physical and psychological torment. She spent a couple of years on disability due to a lack of jobs that meshed with the residual effects of Guillain-Barre syndrome. (The fact that she found not her “dream” job but the World’s Best Boss is miraculous.) Post-traumatic stress disorder and a mental health issue that’s finally been diagnosed as Bipolar II have made it hard to get through some days.
Her husband lost his job shortly before the wedding, and his own health issues have worsened to the point where he is now on disability. The two of them bought a house before they were really ready (i.e., before they had a big enough down payment) in order to take in his bankrupt parents.
A careless driver hit them and totaled the car that was supposed to have lasted them another four or five years. Home, car and other issues have continued to pop up (almost $17,000 in 2014 alone). In the past few years she has endured five miscarriages and is considering whether or not to try again.
So how’s she handling all this? With an astonishing perspective, if her current blog post is any indication.
I say “astonishing” because if I fear that if it were me I’d probably grumble – quietly, but nonstop – about nerve pain, serious fatigue, a compromised immune system and mental illness. Taken singly, any of those would be a reason not to get out of bed some days.
The lack of do-able jobs would have done a serious number on my self-esteem. As for the miscarriages, I wonder if I would have had the courage to try again after the first couple of losses.
‘What I was able to get back’
But the Guillain-Barre syndrome Facebook group to which Abby belongs has lately given her a useful reminder.
“I’m well aware that others have it worse than I do in many, many categories of life. But now it was far more in-my-face(book),” she writes.
Some people still can’t walk years after being discharged from the hospital. The disease seriously affected the hearts of some GBS patients. One woman has motor function but “no sensation in her body,” which doctors predict will last as long as she does.
Another woman’s son has been pronounced brain-dead; however, other Facebook users urge her not to pull the plug because sometimes GBS “can mimic brain death.” You might assume that doctors would already know that. But maybe not, because it’s a disease some physicians might never encounter during their careers.
“I need to remember to be thankful about what I was able to get back,” Abby says.
Finding a bright side
Not that she’s dismissing her own very real issues. Nor should she.
“The dude who cried because he had no shoes until he met a man with no feet is still shoeless,” she notes.
“Which sucks and puts him at a disadvantage. He just now has more perspective of his place on the Crappy Things Spectrum.”
Since age 19 she’s struggled to find a place in a world that doesn’t acknowledge disability. A world that wants to believe it will all go away if we just try a little harder and stay positive.
Sometimes that happens. When it doesn’t? It’s not the disabled person’s fault for not being bootstrappy enough.
I was raised with a rigorous work ethic but also a strong streak of fatalism: Bad things happen. No place is safe. So you work to find even a glimmer of a bright side, or you pretend that bad things aren’t happening. Oh, and keep a smile on your face, because nobody wants to hear about your problems.
I seem to have passed along more of the first than the second. Abby has always worked hard to improve her life. Even after her illness she kept searching for some kind of work, any kind, to keep from having to go on disability. Her reluctance to apply probably stems from the “pretend this isn’t happening” strain of my DNA.
And fortunately, that DNA seems to have mutated. Anyone who reads her blog will know she is fairly forthright about the bad stuff, be it a dark spell of depression or the latest Revolt of the Appliances. But she’s also pretty good at finding a bright side – a true bright side – even when it’s hiding behind a darkness that would make some people lie down and quit.
“I guess you could say I got the lucky end of an unlucky spectrum,” she says.
So yeah, let me brag on her a little. No matter how often she gets knocked down, she finds her way upright. If I didn’t have her as a daughter, I’d be proud to claim her as a friend.
Related reading:
- If you’re so smart, why aren’t you rich?
- The $10 wake-up call
- The fragility of dreams
- If life is the currency, I’m already rich
Hi Donna, I really enjoy reading your posts & I find them very helpful. I agree with you and your daughter. Ignore the haters!
Hi Donna…Your daughter is “a keeper”. Her blog is very unique and I knew she had some health issues but had no idea she had all this going on and Tim’s not well either….sheez…You must be very proud…
I’m proud of how well she’s managed, but dammit I wish her life were easier.
Donna, you have raised one hell of a daughter. Of course, she has one hell of a mom, so….!!! Keeping you and her in my thoughts and prayers!
Inspiring!
I always enjoy reading your blog, Donna. So much common sense here. Your Abby sounds like an admirable young woman. She’s been through so much and still she keeps trying to live a normal, productive life. The Bipolar diagnosis is another tough reality. A friend’s daughter struggles with Bipolar and also the side effects of the drugs prescribed for it. Her latest setback was a drug her doctor gave her to lose weight since she’s gained so much so fast. It gave her seizures and landed her in the hospital for several days. If your Abby could only five her lessons on keeping going…..
That sounds like a very tough situation. I hope they can find the right mix of medication to help her.
I’d be proud to call Abby (and you!) a friend, too. I’ve followed their struggles, empathized with them, and watched her pick herself up and struggle on. A disability that others can’t see by looking at you makes it hard for them to understand why some days you can hardly get out of bed or make dinner or do the laundry or go to the store. Abby can be proud of herself for managing the way she does and you’re right to be proud of her, too.
I’m not a regular reader of Abby’s blog, but I do like to pop in now and again to see how she and Tim are doing. She strikes me as a remarkable and resilient young woman, and I’m always touched and impressed by the support you’ve given her, here and in real life, over the years. Your pride and belief in her shine loud and clear!
I was raised to believe that when a crisis happens, the thing to do is not to despair or cast blame, but to address the situation. What am I going to do about this? More importantly, what options does this open up, and where do I want to go from here? It’s served me and my family well over the years, and I think it’s a trait you and Abby share as well.
It’s an attitude you promulgate to your readers as well, and I think it’s one of the reasons I enjoy your blog and articles so much. Keep on doing what you do, because it means an awful lot!
Intuitive, very inspiring yet down to earth.
What a fabulously brave daughter you have and she is blessed to have you as her mother.
You’ve got an awesome daughter, Donna. Be proud! (And, remind her what a great kid she is.) 🙂
Well, you know I agree with you here – no matter how tough things are, Abby’s a kindred spirit and reminds me we can always multitask: feel the pain, moan about it, and get on with business all at once 🙂
This! Life goes on whether or not we’re comfortable. We do the best we can with what we’ve got.
Sorry I’m late to the party.
Thank you for this post, Donna. I empathize a lot with Abby because, like her I have fought debilitating illness since my teens. But, more painful than the disease itself is the inability of people and society at large to recognize or understand my situation. I have become convinced that people have a deep need to live in denial of the fact that something like this could happen to them or their loved ones at any time. They desperately need to believe that they are in control.
I also can’t imagine how painful this has been for you. I know this is happening to Abby; but I also know that I have frequently taken comfort from the fact that this is happening to me and not my child. It is hard to be a mother.
Oh, yes. I specifically remember praying to God to take my daughter out of that bed and put ME in it.
Some people DEMANDED explanations, such as “did she have a flu shot?” or “why can’t the doctors find out what caused this?”
Or they’d say things like, “But how does something like this HAPPEN?” or “Why did it happen to her? She’s so young! In the prime of her life!” As if tiny babies don’t get sick every day. Sometimes, shit just happens without our permission.
Some of that was probably a struggle to understand. But I agree with you that sometimes people are just in denial. Nobody wants to believe that something like this could happen to someone they love (or, heaven forbid, to them). That’s why a culprit (e.g., a flu shot) needed to be found — if you think you know why something happens, you can avoid it and magically never get sick.
For example, when someone is found to have lung cancer what’s one of the first questions out of so many mouths? “Did s/he smoke?”
I just read an article that 15 percent of lung cancer patients never smoked. So the self-righteous folks who say, “Well, no wonder that guy has cancer/diabetes/whatever — look at how he lived his life.” Translation: I exercise and watch my fat intake and eat only from Whole Paycheck, so I won’t get sick.
Um, yes, you might get sick anyway. Abby was as healthy as a horse — until she wasn’t.
Understand: I’m not against taking care of yourself. (Or getting a flu shot. I get one every year.) I think we should eat as well as we can and keep moving every day. But we also need to realize that certain things are beyond our control.
I have a friend who had GB. I visited her in the hospital as she lay in an iron lung. That was about 20 years ago. She has no problems working 40 hours per week now.
About 20 years ago I was diagnosed with Fibromyalgia. I never told a soul. It was a hard secret I kept from everyone. I did not want to appear “less than” a whole human being. I was given this diagnoses in a clinical trial at a hospital. So, the records were not even traceable. They paid $600.
Actually, I just assumed they were wrong. I was in great denial. When I finally applied for disability, the woman who did the telephone interview was stunned, asking me why I did not get a disability when I received the diagnosis. “I wanted to work.” She was gasping at that point.
People treat a disabled person differently. That is the hardest part. I can see their thoughts and doubts by the look on their faces.
Unlike Abby, I had no safety net. Thankfully, she has support.
I mentioned my friend is fully recovered because most people I hear about have ongoing problems. Of course, my friend could just be covering up her problems so as not to appear to have problems.