Gillian
An email I received today, just as I received it.
As a regular reader of your blog, I read today’s post about how upset you are at an optometrist for not doing what you think is an adequate job treating your son. Instead of emailing the man and telling him why you want your son to wear his glasses, you enter into a kind of barrage and get upset. Well, this makes me mad. But maybe this works for you and gets you what you need for your son. Today I was extremely depressed and wrote down what happened in my usually normal, little mind. I am sending it to you to add to your collection of knowledge about how parents cope with being in our club. I am sending it to you hoping that you will see another point of view in which whether or not a pair of eyeglasses that may or may not help your child’s vision is the least of most people’s worries.
Most sincerely,
A reader of your blog, Gillian.
“How could I buy two Hibachis and charcoal briquettes on this snowy February day without drawing suspicion?” I asked myself. A mother in a local town had been arrested for murder after trying to take her life and the life of her eight-year-old son. She survived, and her child died, but she had only used one Hibachi. Brad Delp, the lead singer of the band “Boston”, had used two and did it in the bathroom, taping the door and leaving a note warning of carbon monoxide and to check on his cat, Floppy.
Would anyone be suspicious if I took my disabled son, drooling and hyperventilating in his wheelchair, to the local market and bought a Hibachi and charcoal briquettes? I could buy some steak and hot dogs, too, and the light snow that started overnight has ended. But what if I bought two? I could go to two stores.
The tiny bathroom of my rented apartment would be, for this singular instance, a perfect place since easy to fill with carbon monoxide. I could lie in the bathtub with a pillow and watch my son leaning back in his wheelchair… there’s just enough room. After taping off the vent and door, I could turn my iPod onto shuffle and light both Hibachis. Perhaps I could give my son some very sedating medication and bring him into the bathtub with me. It wouldn’t be a bad idea for me to take some of his strong anti-seizure medication, too. We would both fall asleep listening to my favorite music and never wake up. It’s too bad I don’t know what his favorite music is… one of the bummers of being very severely disabled.
Would it be necessary to leave a note behind? I’d have to let my other children, who live with my ex-husband, know how much I love them and believe in them. But if I believed in them that much, wouldn’t I have asked them to come help me? Perhaps a note could clarify this to them. Two of the three other children are adults now. But they would all know… everyone would know that I did it because living with and caring for my disabled son was too much to cope with and the help I asked for didn’t exist.
Tears are streaming down my face and my nose is congested. Sadness is what I am feeling. Sad that I cannot find a resolution to the impossible problem of how to care for my disabled son and live a normal life. Maybe if I believed that caring for my son was noble or a good-enough life, it would different. Maybe if I simply hired someone and trained them to care for him, (assuming I could scrape together the money), I could cope with this better. But the facts are that my son is a huge emotional and physical burden. The small joys his life brings to me are heavily cushioned with fatigue and depression.
I would not kill myself or my son. The fantasy I played out in my mind today, the first day of a week-long school holiday in which I have no help for my son, scared me and made me realize I need to get up and get out of this apartment even if it’s just for a little while. But I wanted to remember this moment. I wanted to remember the desperate hopelessness I am feeling and to change the situation so it never happens again. I wanted to remember why I need to go ask for help today from people I had not wanted to ask for help from… my family and government agencies. I wanted to record this moment so I can tell other parents feeling like this, yes, I have been there, too.
Interesting post this woman wrote. She is very brave to put it on paper and acknowledge to herself and to others what she thinks about and how she feels. I totally hear her. I get those moments. For me, they are very fleeting.
This is hard work.
Did she write about both the glasses and the bathroom? I wasn’t sure.
Gillian, a lot of us understand the burdens you carry very, very well.
The veil between continuing to cope, especially on one’s own, and the scenario you describe is a thin one. I hope some excellent help comes your way. And mine, for that matter. I know what a difference it can make. I agree
with Lesley—that was brave.
Gillian — it is good to write these things down, to express them and to share them — good and honest. I have felt these things and, perhaps, have not expressed them, have been plucked from despair by some kind of unseen grace. I hope that you get some help — until then, I wish you strength and courage.
Single Dad — Despite the flippant post about the glasses, the anger, the whatever — we know how much you care for your two children — and we know your own despair that you’ve shared with us many times over the years —
Anyone else familiar with “Better Never To Have Been: The Harm of Coming into Existence” by South African philosopher David Benatar?
This note reminds me of his argument, which is very provocative.
My empathy goes to Gillian and to all of us who understand what this is like because we live it.
Can someone please explain to the stupid people what this all means?
I’ve been sitting here trying to figure out the point since I read it last night and I still can’t. Am I really this dumb? I used to think I wasn’t, but I have officially begun to question that.
So I have to expose myself (GASP) and just come right out and ask…can someone please explain her point and how her story relates to the glasses?
Ken, et alia.:
Some see my spending three posts on the glasses issue as a bit much in that the core issue is trivial. It was a lot of time and energy where I could have just said “keep the damn eyeglasses on him.” In fact, my point was to get the optometrist to stand behind his words and explain them, which some may still see as a waste of my time and energy. And yes, it was a small thing. For me, personally, it serves to distract me from the real shit of the day, from how hard other stuff is. I want everything right for my kids, from trivial to major, that’s just who I am.
I think Gillian is having an extraordinarily hard time with her child and life now, and at the time where she is at the edge, where she can barely go on, she sees me expending time and energy on something trivial, or something that can be dealt with in a simple sentence to the facility (i.e., “keep the damn glasses on him, thank you.”). I know the optometrist will not be allowed to offer medical advice to my kids again. Yes, I know in the scheme of things, this is exceedingly minor, both in David’s life and in these lives we live with these children. I believe that is the point she is making in the opening paragraph. And she is correct.
“Normal” life is hard. Our lives are a bitch.
I don’t know…if she’s correct I mean. And let me say that she is entitled to that as an opinion, and that her opinion is fine by me and I don’t have any issue with it whatsoever, but defining it as ‘correct’? I don’t know…I don’t see it the same way as you do.
I also think that I understood the point all along, now that you clarified, I just wasn’t 100% certain because of the harsh disparity between the two scenarios that were being described. That’s why I felt a little lost and confused.
Clearly, we have all, even the ‘Norms’, felt so completely engulfed by despair and hopelessness at one time or another that we might have thought about some of the darker paths that Gillian described in her writings. I feel terrible about what she wrote, and trust me…I know those dark places like some rooms in my home. TOO well.
But I also think that sometimes it is important to keep in mind two very important things. The first is the one that I think almost everyone always overlooks and that is this…you are writing a blog. In essence, it is a form of ‘entertainment’ in some way. There is dramatic emphasis. Editing. Crafting. Effect. You are storytelling, and while the stories are based on fact, they are still meant to be interesting, and the writing has to be passionate no matter what the subject or no one will read.
The other thing is that a person can choose to go to war over anything he/she wishes to, and it does not matter if I think the reason is less significant than something that is going on in my life. It’s something I alluded to before, about my comparisons of Bennett’s disability to other kids, and how it was tripping me up.
I had to start thinking more globally. More universally. That Hell’s Pizza analogy worked best for me. My best friend Mark does not have a disabled kid. But he has a holy bitch of an ex-wife. That’s his slice of Hell’s Pizza. In MY universe, I’d take that slice over mine. But he has every right to bitch about his slice, and I have every responsibility as his friend to listen and to help him with his.
Slices have to be measured, I get that. If someone’s slice is that he was cut off in traffic, maybe I decide that this person is someone whose priorities I do not think are really right in the head, and maybe I cut that person out of my life. HOWEVER…I also take that person’s TOTALITY into account before making any kind of determination as well.
Your glasses rant…is it minor? To some? Maybe. To me? No. To you? No. Is it as ‘important’ in the ‘scheme of things’ as some of your other blogs? No. But does every blog have to have the same level of importance? No. If you and I were real world friends (which I really wish we were cause I think we’d get along great) would every event we went to have to go down the same way? No.
It all works together to create a greater whole is I guess what I am saying. It’s all one part of a complete picture. If someone came to my blog and read the one post about my bleeding butt they may have never come back. Is that me? Umm…don’t answer that.
I think I’ve made my point AND….I have officially broken my rule again. I have hijacked a blog in a comments section. SHIT. I’m sorry. If it is too much, say the word, copy this, e-mail it back and I will post it on my blog as a post and link back over to here.
Later…and Gillian…I hope that you feel much better than you did when you wrote that. It’s a terrible place to be. It’s OK to visit…but you never want to stay there very long.
I cannot imagine what it would be like to be severely depressed. It is not something that I have experienced, personally, knock on wood. Obviously, it’s a terrible, terrible thing. I hope you can find peace, Gillian. However, to read posts like Single Dad’s and those of others who are not near-suicidal shows that there are indeed people out there who are coping, and that it is possible to cope and have “a life”, though certainly not a “typical” one. In my view, it is not so much S.D.s posts that are “trivial” but Gillian’s current perspective/life situation that is out of balance, as she readily admits, and which is certainly not uncommon in this world. We all know that, when it comes to caring for our kids, the devil is in the details. This takes on even more significance when one’s child is in the care of others, not so emotionally invested, who get to finish a shift, wash their hands of the day (and of our kids), go home and live that “normal” life. This is simply a reality that S.D. is blogging about and has no need to feel guilty about doing.
Gillian, my son was profoundly disabled, drooling, seizing etc… And our second child has an unrelated syndrome.
I know your message dug deep in your self being, and was meant to keep things in perspective… However, I’m hoping this will help you to eliminate the negative, self destructive thoughts that you shared. My son was injured at birth. His last 9 years were at home on life support, vent/trach etc… He passed a year ago Jan. he was almost 24 years old. I can’t tell you how much I miss this child, always needing me, and others to be fed, changed, bathed, loved, massaged, suctioned, making incredibly difficult decisions… The PEACE, time, freedom since his passing… I would take him back in a HEARTBEAT!!!! I HEAR ‘single dad’s’ plight, daily grievances of ignorant or judgmental staff, insurance politics, unstaffed shifts, everything in my life that pissed me off soooo intensely, I would still take him back in a second!!!
I was so blessed to have been a part of his life. He taught so many people so much about what life is, about a loving God, about self sacrifice. Strangers have approached us and told us that they had accepted Christ, just because they heard the story of our son. You see, we are just care takers, they are here to teach and to bring other to God…
Enjoy your blessings!!! Our days with them are numbered, and they will be gone before you know it… Trust me, I know… Many blessings to you…
Claire brings up an important point; the essence of Gillian’s letter isn’t just about how hard it is to raise a severely disabled child, but also about how devastating it is to be severely depressed. As someone who HAS been severely depressed (and I don’t have any kids, though I wish I did, so I’m not depressed for the same reasons), I can say to Gillian: after you get the immediate help you need caring for your son, please get some help for yourself. Make an appointment with your doctor and tell her about your suicidal fantasies. Set aside money in your budget to see a therapist once a week so that you will have a safe place to rant or rave or say whatever you can’t say to other people. Please go on anti-depressants, if your doctor(s) suggest it, at least temporarily to help you get out of the place you are in right now. Other things that help cure or manage depression: Getting enough sleep (take melatonin or a sleeping pill if necessary), exercising a few times a week (clinically proven to be as effective as anti-depressants), and eat healthy (always helpful). Make sure you have a reason every day to get out of the house and talk to other adults.
I know what it’s like to be at the bottom of the hole, and with medical and mental health care, you can at least get to the place where you can see the top, see that there is a light and a way out of the hole. The rest of the way will be with the help of others who help you take care of your son. You CAN get out of the hole, please believe me.
I agree with SB.
There are times you will look at your life and think, “Of course I’m depressed,” but when the sadness is often or becomes despair or suicidal fantasies start to get detailed, it is past time to get yourself help.
When you cross from sadness to depression your brain can get in a rut, sometimes medical assistance is just the lever you need to get you out. You will not know whether you can feel better unless you try. Part of being a good caretaker is making sure you are in optimum health – physically and mentally – so that you have the internal resources to do what you need to do every day.
Call your MD, get a referral, make an appointment.
Best wishes and best of luck to you.
When I read what she wrote, two things really struck me – the sense of isolation at having to parent him alone, and the fact that her other children are with her ex-husband. I would feel profoundly alone and joyless in that same situation.
Without a strong support system of friends and family around you who ‘get it’, it’s often hard to look at life with a positive attitude no matter how hard you try.
This too, seemed familiar to me:
“Sad that I cannot find a resolution to the impossible problem of how to care for my disabled son and live a normal life. Maybe if I believed that caring for my son was noble or a good-enough life, it would different. Maybe if I simply hired someone and trained them to care for him, (assuming I could scrape together the money), I could cope with this better. But the facts are that my son is a huge emotional and physical burden. The small joys his life brings to me are heavily cushioned with fatigue and depression”
Although my daughter is not severely disabled in the same sense that her son is, when we first received our diagnosis and I had to shift to my new reality I felt much the same way. I shocked myself by continually thinking “I wish she had died at birth”; most especially when people would tell me what a blessing she was. I would sink even further into depression when I was told that I was the perfect mom for her since I was such a proactive and good mom; that God picked me personally for this job. I would think, “Well, if he could pick me personally, couldn’t he fix her in the first place?”
For me, one of the hardest parts of her diagnosis is the unfolding of what will happen to her slowly – it’s not just a change in her body but a change in her brain that will lead her to have behaviors that I don’t tolerate in other humans right now, but will have to live with in close proximity my entire life. She can never be left alone.
The first year after she was born the constant cycle of work and more work with literally almost no let up took me to that place of fatigue and depression. Although I am married, my husband’s job left 99.99% of the work on my shoulders. I worried over every single breath she took when she finally came off the ventilators, worried that without the ability to vomit or clear her own airway she would aspirate and die in her sleep, and at the same time would occasionally find myself wishing for the ease of both of our burdens. It’s a guilty, awful, sickening wish and I sometimes still wonder what kind of person I am for ever thinking that. I’m not in that place anymore, but it took medications and actual physical in home respite care to change a lot of that.
Gillian, if you are reading this, I wish you the best. I get it. I really do. I wish I could give you some respite care and let you just sleep for a while with a cozy pillow and soft blankets.
I think people should be somewhat cautious about assuming that an expression of pain in response to a terrible situation is the same as clinical depression. It is so important to be truly heard and witnessed. And to the undoubtedly well-intended commenter who suggested more sleep, he or she should realize that there are parents whose children are prone to seizures or apnea or reflux or other situations during the night that require a parent to be ready to react. I don’t know if that’s the case for Gillian, but as a single mother of a severely handicapped daughter, I can tell you that what constitutes good, common sense advice in the regular world can sometimes feel gratingly unhelpful in a different context.
“For me, personally, it serves to distract me from the real shit of the day, from how hard other stuff is.”
This one comment stuck with me and started leading a live of it’s own in my brain.
I think it’s to do with the need to succeed at things. You pick something minor to “nitpick” about, you put in energy and you win. It makes you feel good. The rest might still be a mess, but at least this was a victory.
And in the case of the eyeglasses, you could have said “just put the eyeglasses on”, but then he wouldn’t have learned from it, and done the same sloppy job on other patients.
When you go out and fix things you do it proper. Which makes you feel good and keeps you going.
That’s one of the hard things about depression, you need to invest energy to get out of it, but you don’t have that energy. The energy you have left is spent on the daily routine, but that doesn’t give energy, it doesn’t boost your happiness. It keeps stuff going. On and on. Day in day out. Never getting better.
Vicious cycle.
God, just writing that last piece makes me feel depressed.
@ Gillian I think you’re off on the right track now at least. You know where you are and where you wanna go. You want to make it better. Take care. I’m rooting for you.
A&A, I’m not sure if you meant myself or not, but just to clarify I wasn’t suggesting she sleep more; I know the impossibility of that without respite care for your child.
However, when I was finally able to get that respite care myself so that someone else could listen to her breathe while I slept, it was a tremendous relief. Sheer exhaustion is draining in more than one way. I wasn’t even suggesting she get respite care… just a wish that I could help in some small way.
@Laurie–I was very moved by what you had to say, and no, I didn’t mean you. I share your desire to give Gillian a bit of comfort. I’m remembering an anecdote a “special needs” mom told me once, about bursting into uncontrollable tears when someone she hadn’t met before unexpectedly handed her a cup of tea. She was so in need of a little kindness and acknowledgment, even that small gesture undid her. It is humbling to hear of the future you face with your daughter. Mine with my own is unknown, since she has recently been returned to the long familiar land of no diagnosis. I wish you well, Laurie. Wish us all well.
4:07am…reading these posts helps me to know I’m not alone. My son is with me tonight and having very active seizure thru sleep. Couple Ativan and all it seems to have accomplished is create apnea events. Called Kirks mom @ 3 to see if I could do anything different..nope.
I get it Gillian. Felt that way for awhile now wondering which way out to pray for…our divorce , while painful, has offered me every other week without this. I sobbed when my counselor refused to take payment for my sessions…first time someone outside offered their help.
Wrote a song this weekend that is so depressing I can only share it here so my son/s won’t be affected. My brother lost his fight with cancer in nov, one son severe seizure disorder, the other type one diabetes…now separated from the only person that could fully understand and alone.
Frozen
He fights just to stay nearby
No blood left unpoisoned by
Years of relentless hurt and pain
Why won,t the sun break through this constant pain
She turns with a tear in her eye
Her life has been shattered by
One child that lives body broken
Another with pain that.s unspoken
She,s falling down under the wheels of the world
A heart beat that,s strong but god knows for how long
Is there a reason we carry on
What purpose is left here that strong
Leaving would never be judged all that wrong
When there are no words left inside for a song
He,s fallien down under the wheels of the world
A heart that was beating now feeling no more
I must find the will to try
It,s too hard to say goodbye
All of the leaves are still frozen
Another fake smile and emotion
I,m falling down under the wheels of the world
My heart is still beating but not sure what for
…you are not alone- big love yer way. ( typed on kirks iPad 😉