1978 001

Photo: My father and me on Mt. Rainier in 1978.

It’s Yom Kippur today, or was: the Day of Atonement and the holiest of days in Judaism.  I’ve been very sick the past two months due to the never ending monsoon where I live and its affect on my body due to Ehlers-Danlos syndrome, on top of other issues in my life.  It’s been very difficult, painful, and depressing, so my mind has wandered to my father as I’ve sat for months in utter isolation, even though we are estranged yet again and have had no contact in months. Last night, before the sun set on Erev Yom Kippur, I sent him an e-mail.

This is a time for reflection: to think of where one has erred and where one can improve.  I wasn’t expecting a reply to my e-mail; I just wanted to share my thoughts at this time.  I was raised Reform and am not overly observant, but there are traditions I choose to follow.

I wrote in the subject line of the e-mail the traditional greeting on Yom Kippur: Good Yontif, my father—anglicized Yiddish for Good Holiday. The rest was highly personalized on purpose, as I know how to get my father to understand my point, if nothing else.  So, I wrote:

My thoughts this Erev Yom Kippur:

My father taught me to be strong and tough, so I am.

My father taught me to be outspoken, so I am.

My father taught me to be responsible, so I am.

My father taught me to be the squeaky wheel, so I am.

My father taught me to be funny, so I am.

My father taught me to be a Jew, so I am.

My father taught me to be affectionate, so I am.

My father taught me to love doo-wap and Motown, so I do.

My father taught me to not let others disrespect me, so I don’t.

My father taught me about tzedakah, so I give back.

My father taught me business sense, so I use it.

My father taught me to speak up against injustice, so I do.


My father taught me to be stubborn, so I am.

My father taught me to talk down to people, so I do.

My father taught me that asking for help is a weakness, so I don’t.

My father taught me to hold grudges, so I do.

My father taught me to not rely on people, so I don’t.

My father taught me to cut people out of my life, and so I do.


I learned all of these traits—both good and bad—from you.  I atone the latter: these horrid traits that go back generations. My mother taught me very little that I can recall going back to 1977 and I have few memories of her and so many of you, a man who is long gone now and who has no memories of my formative years.  I have many traits that you don’t have and vice versa, but I am my father’s daughter, and it wasn’t from mere observation.  You wanted me to be like the man you were years ago before you lost interest, and so that is what I became and still am, despite becoming debilitated and disabled so early in life.  I don’t know who you are now, but I knew who you were back then: a father who, despite having many flaws, loved me and who I could always rely on, and who I loved in return.

May you be inscribed in the Book of Life this New Year.

Your daughter

My father replied to my e-mail today and let me preface this by saying that list was abridged and purposely focused on the good traits he taught me.  He apologized for some things, which was unheard of, and made excuses for others, but then the e-mail turned sour and was focused on how my family had reached out to me and that this was the time to not be so strong and tough and to let others in, which is just absurd and completely false.  I was also told I needed to learn how to apologize. To whom do I need to apologize—my grandmother who told me I was “the broken tile in our family’s mosaic?”

My father stopped talking to me, and by that I mean by e-mail, because I hinted at the fact that my physical therapy benefit was cutting out and as my income is mainly from SSDI—federal disability that pays for my prescriptions and little else—I would need help paying cash for my much needed physical therapy.  My father was a successful businessman who lives a very comfortable life, so this was not asking for much.

I won’t even touch on the lack of emotional support from the bulk of my family in general or the verbal assaults thrown my way simply for falling ill due to a genetic disorder.  As the day progressed, the back-and-forth e-mails got downright offensive and I was told to not contact him again—all for speaking the truth.

I tried and failed and the impasse continues, and on a day when things should be resolved, as is our tradition.  I’m left with a heavy heart and am as frustrated with this relationship as I am with this disease, both of which are utterly incurable.

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14 thoughts on “GOOD YONTIF, MY FATHER

  1. ShimonZ says:

    It seems it would be better to work towards understanding and mutual respect before you ask for any help from your father. I think you started very nicely, though. It’s a shame that the interchange broke down quickly after. May this be a sweet year of regained health and strength for you.

    • Thanks for your thoughts, Shimon, and sorry for my absence on WP in general. Well, this is a long story that goes back 30 years or so and I left so much out that the back story is missing. When my genetic disease just hit 12 years ago, I became destitute as I could no longer work, which I had since I was 14 and all through my schooling. This is where family is supposed to step in, but they didn’t.

      My father and I were on good terms for us when I hinted (didn’t ask directly) that I needed help with physical therapy a few months ago, which is the only way to help prevent some of the degeneration from my disease. You can think of it as insulin for a diabetic I suppose, but the insurance in the US doesn’t care. I honestly have tried everything with my father and I’m not the only one who has been estranged from him, so I can only bang my head against the wall for so long.

      If you know how I can understand a narcissist who has little respect for anyone, please let me know as I’m lost, as are others, and I have spoken to many counselors about our relationship in my time and they all wonder why I bother with him. I point to the good years until I was 10 or so and just get an odd look as I’m middle-aged now.

      A sweet year to you, as well, and may you be safe despite the mayhem across the border.

  2. dyspatient says:

    I’m sorry your dad is not hearing you. I think that was a really powerful message you sent. I know you say he’s a narcissist and the response sounds typical, at the end at least. I’m so hoping the monsoon stops soon. I know it won’t fix everything, or really fix anything, but I know this has been just killing you and I hope it stops.

    • Thanks D,
      My eye hemorrhaged (I can only imagine why…) and I’ve had the worst week EVER, but will spare you. Yes, I’ve accepted that my father suffers from narcissism or narcissistic personality disorder like his mother and as you know, there’s little that can be done with the personality disorder group. He doesn’t hear anything rational, so what can I do? Well, sure glad I didn’t get that gene! It’s just frustrating because I’ve tried everything and get nowhere, and then I have the emotionally-unavailable mother, so I guess I’m just an orphan. Sigh… I think his interest in me until I was around 10 was due to trying to clone himself (typical narcissist), but then I got too old so he found new projects.

      The monsoon in gone (!!!), but due to the nightmare week I hardly noticed, aside from the fact that both my shoulders are subluxated now from the weather and no PT for so long. Ugh. One more long, doc appt. to go and my eye is clearing so can see better now (relatively speaking). I think it’s from the swelling, although it looks like the blood spread to my cornea if that’s possible (don’t think so and don’t care anymore). Oh, I saw my GP this week and got nowhere as predicted, if you recall all that. Argh. Current weight is 97 lbs and no suggestions on how to help me. Brought up Gastrocrom to my allergist, well I saw the nurse, last week for my mast cell issues (also why my diet is so limited) and doesn’t know about it, so that’s out. Gee, could you research it? I should have brought in a journal article! Those were just minor issues and don’t get me started on the pharmacist in my ghetto neighborhood refusing to fill my schedule IV med as he “didn’t feel comfortable.” Really? I found out from my other doc’s assistant today that that Walgreens (not my normal CVS as I can’t take their generic) is under heavy watch from the DEA. Why is that my problem? I’ve told them for yrs they need to ID people as they would never ask for mine and this is the result, especially due to all the hookers and junkies in that place. Omg. I hardly have a voice from screaming so much this week! OK, heading to your spot with a better attitude!
      A :/

      • dyspatient says:

        Hemorrhaging eye? Shit! That’s awful. And subluxed shoulders. And sanctimonious pharmacist bastard. Good lord. While I am glad the monsoon is over, I am sorry that in its wake has come all this awful. I did hear about Walgreens doing this crap, where did I hear about it? I can’t remember, news story or something? They’re telling people it’s law but it’s just their new store policy, to harass their pain customers. I think it’s a massive corporate passive aggressive stunt. Makes me pretty pissed off. Sorry your throat’s sore, but good reason. I’d be screaming too.

      • Yes, it’s a great start to a new year. OK, thanks for the tip! Walgreens said this was the law (DEA thing) and I knew the head pharmacist (great guy) and he left a few mos ago, which is when all this started, as I was asked if I had labs done for my kidneys last month. Did he mean my liver enzymes? Uh, yes and you’re not my doctor! I think my good pharmacist left due to the issues there!

        My doc’s medical asst said it’s ALL the pharmacies here and a new thing, but emphasized the issues with my pharmacy in particular (busy, 24/7). All I know is the GM of the store said that if the pharmacist faxed my doc for more info, then they were following protocol and they DO have the right to not fill (didn’t the BC pill issue go to the Supreme Court or something?). I was told this was done and that’s why I did finally get it filled by the new, head pharmacist on Tue. evening, but the med. asst said she got a fax from them late Tue (probably while I was waiting, not from when I called in my refill which was rejected), so protocol was not followed! She spoke with a female pharmacist on Wed. (not sure who that is) and she said the dosage needed to be in parentheses! Really? She also told me within 3 mos I’ll have the same problem so try to call it in as early as possible, but it’s controlled so I get 3 days and what if it’s a Friday? I’m so mad! The junkies have ruined it for the sick people! I thought this was just a narcotics issues. :/ If I had the energy I’d write a post!

      • dyspatient says:


        And it looks like CVS is getting in on the act too:

        Given how I’ve seen pharmacies run, from the patient side, I can’t imagine that they think they have the administrative control and information they need to take on the role of DEA enforcer. Moreover, they are scrambling law with store/corporate policy and handing customers and doctors a load of garbagy half truths when asked for an explanation. It really pisses me off. And I agree with you in being angry at the prescription drug abusers too. But I still see this as a passive aggressive stunt on the part of the pharmacies to pass on what they probably see as overly restrictive regulations on them to the patients. Can’t be bothered to do good training with your pharmacy staff to help screen out Rx fraud? Then just hassle everyone until all of the patients with controlled substance scripts go away. It’s so unethical.

      • Thanks so much for the links, D! I found a lot online since we chatted, but missed these 2. They all focus on narcotics, except the CVS article that addresses Xanax, and that’s exactly why the good docs I’ve seen WON’T prescribe it anymore. I’ve never taken either (well, I was FORCED to take Vicodin 12 yrs ago when the EDS hit and was horribly sick from it), and Klonopin is a better choice for me as it’s a long acting benzo and helps my spastic muscles to an extent as it’s also an anti-epileptic. Argh. It doesn’t have street value like Xanax, which is short acting and I get my Ambien (also schedule IV and of little street value) at my CVS w/o issue. The timing of the Walgreens lawsuit makes perfect sense as my issues started around July, too!

        You are so spot on and Walgreens was the worst in never asking for IDs, etc. so shame on them! My CVS always asks and makes you sign for all your scripts, but that med. asst said they were an issue, too. I’m just lost that this is all over my Klonopin! Many EDSers are on morphine and Methadone. How do they get those filled and I’m in a rather lax state out here in my book? I’d take those too if I could as my chronic pain is so awful. What are we supposed to do, or anyone with similar conditions? Maybe the junkies can just start shooting up heroin, which is usually what happens as it’s a much cheaper opiate, and leave the sick people alone. I don’t get how this all started when it IS so much more expensive. I blame the DEA, the bad docs, and the pharmacies for not doing their jobs!!! Ugh.

        Thanks again!

  3. Hi A. Read your post on the 19th and when I first saw the picture I got such a nice, warm feeling. Then your letter – all so well written. I thought it was beautiful and was hoping something really good would come out of it because it was so honest. I’m so sorry you have to go through that with your dad – and seeing that picture of when you were little makes it all the more difficult. Why does life have to be so difficult? How are you feeling? Is your eye OK? And the little girl?

    • Thanks Sheep,
      Yes, that photo is of the father I could always rely on, even if he could be very mean, which was his way of toughening me up. He’s in many of my photos before the age of 6 (before my 1st brother was born) as I’m not sure where my mother was and in the one I posted, he looks like the king of the mountain to me, which is how I saw him. Unfortunately, when his job of cloning himself was completed when I was 10 or so, he took a hike, and I’ve said for many years that the Bearded Man just died. He had a beard in those years, as seen in the photo, and it’s truly like that man died and was replaced by someone I don’t know. He also had a midlife crisis–one of many–around that time as he’s just shy of 30 yrs my senior, so when I was 10 he turned 40. I keep trying to jog his memory in hopes he’ll return, but I think after 20 + yrs or so of attempting to work things out, it’s time to give that a rest. It’s very sad and there is a long history of dysfunction and estrangement in my family. I don’t know which one of us will go first–I’ve always presumed it will be me–but if it is the other way around, it will be the saddest day of my life.

      Aside from that, I am still a mess from the 2 month monsoon (now gone) and the affects on my body and lack of PT. All my hard work washed away and I’m a subluxated mess and my myofascial pain is worse, of course. I believe my mast cell issues, which no one is familiar with here, are completely out of control now and may be what’s causing new issues and the unexplained weight loss that is very worrisome. I have no means nor money to get to LA and pay cash to see a specialist, so just stuck. My allergist isn’t interested and I told my worthless GP that I was going to starve to death and she hardly seemed concerned. I’m around 16-17 lbs (sorry, kilos?) underweight for someone with a thin frame (which I do have) and my BMI is around 16, which is way too low (I’m between inches as I shrunk!) so hard to say exactly. No one will help me and I’ve fired and hired new docs and am just lost here with no one knowing about EDS. So, nothing great on my end and sorry for my sob story, but I haven’t been this sick in over a decade and see no hope at all. I seriously want the fibro Dx back as at least that doesn’t cause your body to break down!

      Moush Moush is on the Palladia every 3 days now and I’m just praying it’s working and she won’t have side-effects now. It’s all too much to deal with and this week was so awful, but I won’t get into it all. Oh, my eye is healing, but it’s not gone and driving me crazy. :/
      Take care, A

  4. The letter to your father was so eloquently and beautifully written. I wish something much better had come of it for you. You tried and I suppose for now that’s all you can do.
    Hugs A, you’re not alone, at least not in thought for whatever that’s worth. I’m here anytime you need to talk, just shoot me an email. xx

    • Aw, thanks. It’s such a long, frustrating relationship (or lack thereof), but I think I’m finally coming to terms with the fact that my father is not capable of being a father, or even interested. It’s just so hard as my father was the only parent that I remember, so I never want to let go…

      I really appreciate you support! XO

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