julie: on mornings

It was late at night, about 12:30,  when the emergency room intern said “detached retina,” and that yes, I should immediately notify my employer that I would not be in for at least several days.  When I finally got a chance to call it was later, about 1:15, and I felt bad because in order to cover for me someone would have to leave much earlier in the morning than usual, like around 4:30, and that meant that they would really be getting up in the middle of the night. 

As none of what the intern had asked about while talking to me about the loss of sight in my right eye, certain types of pain, any injuries, certain patterns of altered sight, none of what she described had sounded familiar and I had answered no to all of it,  it did not surprise me when the emergency room resident came and looked and said  I did not have a detached retina.  And I was even more impressed as he asked questions to which I could emphatically answer “yep, that’s it,” and “yes, for years.”  This was the first time ever a doctor had actually guessed at  so many of the weird things that I had felt for so long, and had actually made it sound like they were a group of things that might be related.  I was really anxious for him to get to the rest of the sentence, “You do not have a detached retina, what you actually have is…”   But he didn’t.  He said he was referring me to a neuro-ophthalmologist and he and any other doctors who got involved would take me through tests and tell me what was what.


If you are not asleep at 2:30 in the morning, if it’s that late and you’re just awake, not for a specific reason, it’s usually an uncomfortable place to be.  If you are in the emergency room at 2:30 in the morning, with the exception of having babies and maybe something else I can’t think of right now, it can feel kind of desperate, you wouldn’t be there at that hour if something didn’t feel really wrong.  If  you’re there and you know there is something wrong and nobody wants to tell you what wrong it is, that is  really scary.  I wanted to ask exactly what was wrong with me, but instead  I asked the next thing that was on my mind, “Will I be able to drive, will my sight come back?”  He said it probably would.  I just sort of was looking at the discharge papers and referrals and saying that I as going to miss work for the first time ever and had had to take the bus and it would be almost silly to go home and come back because it was getting later and he had told me to be at the clinic really early and  I just looked at him and said, “You know what’ wrong with me, can’t you just tell me?”  Not having an answer is always hard, but in that place that isn’t really morning yet but is past night, like if you go to sleep now you won’t really get much sleep but if you try to stay awake you might not make it; where you have almost made it to dawn and another day but not quite and so you need something to hold on to, in that place, not having an answer is just too hard.

Having Multiple Sclerosis has meant many things to me; it has meant many losses.  But it wasn’t until I started thinking about this topic that I realized that the big things, my intelligence and ability to think,  my job and ability to support myself,  some relationships, the whole idea of planning for much in the future or even the idea that I can count on my legs lifting me out of bed tomorrow, those are so big that they don’t make me cry, they overwhelm me and I just have to find ways to deal with it all and those are the things I work at accepting and so they are the things that I have learned to face with less sadness and more determination.

But this morning I went out for a walk, which I am so glad to be able to do, and I was stopped at the corner and a car went by with the windows open and a great song playing and tears just started rolling down my face.  I drove for a couple years, my sight came back and it was okay.  But I don’t get up and go to work every day, I don’t have a car anymore and only drive in emergencies and one thing I really, really miss and I guess I never let myself really think about just how much until that moment, is 5:00 in the morning, the sun is around,  and there aren’t many cars on Lake Shore Drive and one of my “morning CDs” is playing just loud enough and  I feel like I’m ready for anything the day can bring.

Every morning I am happy to wake up, happy to feel my legs and arms and everything else I check on.  I don’t know if it’s because I haven’t found something to replace that morning drive or not, but I don’t always feel ready for what the day might bring.  I guess that late night visit to the emergency room lasted into all my mornings.

6 thoughts on “julie: on mornings

    • Ridiculous….You either were up too late or up too early and are not thinking clearly. This is a two person blog and what each of the two people in the two person par bringst makes it the blog it is. I would not write the entries I write if I didn’t know that you were working on one as well. And really, Ginny, there are times when I would love to be able to crawl into a space and make parts of your entries mine.

  1. I know but this one blew me away. The sentence that started with “Not having an answer …” was beautifully written. I keep going back to it.

    • Oh, thanks! I had to go back and look because, as you know, I kind of just often end up at the last minute and don’t really reread a whole lot. I was saying to someone recently that it’s so hard when you try something that you have rarely talked about and never written about, you haven’t really developed any narrative that is already sort of refined. I have given a lot of thought to both the visit that night and the various points between dusk and dawn.

  2. Well once again I feel myself in the middle of both replies. I have actually come to hate mornings as well as relish them, if you can understand that. I, also, suffer from MS but for me there were no late night visits to the ER (if I wasn’t the one working there) but there were the days and nights when dragging around my right leg like it was not attached to my body and not being able to keep up with the masses made me sad, angry and just plain scared. Now that I have carried the diagnosis for so many years it frightens me to go to bed at night fearing I will wake up paralyzed or unable to move a limb in the morning, but sleep is paramount to keeping this disease as much at bay as possible, so I pop a Xanax (mama’s little helper) in the PM and off to dream land or in my case, usually nightmare land and up every morning at 5:15 to get my husband off to work. I, too, go through the morning ritual of testing everything to make sure it is working (well working up to my baseline) and out of bed I go, stiff and sore but moving and that, for me, is all I need. I miss any routine at all as I have not worked in the past 6 years on a regular basis so for me it is the morning ritual of getting up, making breakfast, seeing my husband off to work and then planning my day which usually consists of cleaning, ironing, computer and oh if I am lucky, emptying out the dishwasher or washing clothes. I take my pills, shoot my shot, rest and then the rest of my day is ahead of me – more often than not alone as I really have nowhere to go and not much to do so I space out everything so I can fill my day. I, like Ginny, am no good without my morning coffee and checking my e-mails and FB but I can only drink but so much coffee these days as the DMD has torn apart my stomach lining and more than a cup or cup and some just makes me sick. So, as for mornings, they are the time I get to realize if things have gone awry during the evening or not, assess my physical and mental situation and then proceed with my average day (which I may complain a lot about but am eternally grateful that it is what it is, considering my state of health.)

    • hey Judy! Thanks for the reply…I was trying to think of how to explain to Ginny what is similar and what is different and what you said made it much easier. It is like so much, it doesn’t really “look” different, but it really is. Thanks for reading our entries each week and responding…it is really good hear from you here, we appreciate it, and I hope that what we talk about makes at least one morning a little more enjoyable.

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