This weekend is the Folsom Renaissance Fair. MS MOMS has a wine booth there. My husband and caretaker, as well as part time manager, got us this spot. Mark supports MS MOMS and is one of our best fund raising directors.
I did this show last year, and only crashed on Sunday. Even then, I tried to get back on my feet, or bum as my legs would have it, and work. There is no pay. There is no golden statue at the end, just a burning desire to help others like myself.
This June, I also attended the Fair Oaks Tudor Fayre. They were gracious enough to let us run soda and water and most of the product had been donated by local stores. At this show I followed all of my rules regarding the heat; kept a cool rag on my head at all times, kept my chemise cool with ice, and drank water. I went through all of Saturday in 100+ weather. Standing for longer periods than normal, talking to more people than I usually do in one month. All right I’m a hermitess, make that 3 months.
So what’s the issue? Last October and this June I came face to face with a problem that just irks me.
I have multiple sclerosis.
Difficulties I would normally not have at home, like making change, came out. We planned the booths, the product to sell for donations, and even my being at these shows, as if I were still the Lorna from 2000, newly diagnosed, and full of fire. That fire can only burn so long now before I melt.
In June I ran up against not only the heat, but new cognitive and physical stumbling blocks. I could not do basic math. (And this was AFTER coffee.) I would look down at the money, then again at the purchase, and freeze. Numbers swirled in my head and just as I would get close to a reasonable summation, the kind patron would ask me a question. So not only did I find that I was a bit rusty, or completely full of holes in the part of the brain that does computations, I also discovered I could not multi-task.
Yes, at home I know that Lorna doing three things at once is common, but this does not mean that all three things get finished, or are related in any way to what I think I’m supposed to be doing. However, I have found now that my condition has progressed to the second stage, secondary progressive MS, home is safe haven. At home, I can forget what I was saying and someone finishes my sentence for me, or simply “gets it.” At home, I can schlep around in, now baggy, sweats with no face on and still be the most beautiful Mommy in the world. Talking to children is complicated, but nowhere near as difficult as dealing with adults.
Eye contact, tone of voice, the way words are phrased, there are a number of ways just by speaking that I can give someone the wrong impression, let alone my body language or sarcastic nature. Again, I find myself beating my head against a problem that has haunted me since my diagnosis 11 years ago. I look too good.
I can be standing on wobbly legs, with the world moving just a bit too fast, attempting to find the right words, and leaning on my cane, yet I look “ok.” I can be running to the bathroom every 15 minutes, shaking not from caffeine but because I have tremors, and feeling as if all my symptoms are hanging out in full view, when someone tells me how good I look. How great I must be doing.
Just great. Now if only I could remember who you are and why you’re talking to me. Did you already pay for the beverage? Or was that the man standing next to you? Oh look! Here comes someone who knew me before the multiple sclerosis. This is always fun. Not only is their last memory of a well Lorna, but this Lorna doesn’t look all that “affected by her MS.” I get asked how I’m doing. This is always tricky. Do they want the blunt truth or the smile with the words “I’m fine?”
Usually, if I go the first route within a few minutes their eyes begin to roam and I realize I just gave a 3 minute lecture on all of my woes in an attempt to be honest. This turns out to be the best way to make someone think you’re a hypochondriac or simply melodramatic. Because I don’t look the part of a disabled woman who cannot hold down a job and requires help at home on a daily basis. They don’t know the other person in the booth is my in-home assistant.
Each time I go out of the house I find myself either faced with new challenges, when did people start talking so fast I can’t hear or understand them? Then there is my own compensation-you don’t know I’m leaning against the table because if I stand on my own , I sway like a drunk and this does not help my vertigo issues. I keep my hands in fists, knotted into my clothes, or under my legs if I am sitting. In the beginning it was my adaptation to shaking and loss of fine motor control, these motions are now so common to me, that I don’t recognize them as compensation for lost parts. (Okay I just recognized them.)
So we planned this booth, made the flyers, got the product, and all this time we’ve been betting on an appearance by yours truly. Yours truly was fighting a nasty cold only a week ago and still feels out of gas. Yours truly feels inadequate and terrified. If I do not go, I am home alone with the children which, after a couple of hours become difficult without help. If I go and do not feel well, there are not enough volunteers to run me home and run the booth. (I cannot drive any longer.) I feel people should see a put together, groomed, spectacular Lorna. Kick auto-immune butt, never give up, and never stop laughing!
Yet we have not planned around my disability, we planned around my ability to pull stamina out of my butt for a few hours and scheduled for the crash afterward. We did not schedule for medicine taking, bathroom trips, the inability to stand long, or even my newly discovered lack of cognitive functioning. In fact, Mark has it planned that I be out front, taking the money and telling the world about MS MOMS! I want to. I feel I have to. Yet, I am scared that I can’t pull it off and will end up ruining everyone’s weekend by being unreliable or, god forbid, needy.
The guys Mark and Mike work every day for MS MOMS. The few people that come and volunteer at the booth are usually family or close friends. Even a few of them are still adjusting to the idea that this often loud, chatty woman, really can’t stay up until midnight and sleep in a tent. I may sound fine, but that doesn’t mean I am.
Of course now, after being awake from 1am until dawn, going over the issues in my head, and writing here, I will be wiped out for today which is set up day. Actually I don’t think I’m required to be there for that unless I want to take the kids and let them run about the park chasing chickens while I watch on helplessly knowing I can’t catch them (the wheelchair is a big discussion in the house right now) and that they are bound to interact with people I don’t know inappropriately. “I’m sorry Arthur (2.5 years) took all of your booth stakes and brought them to me, he’s used to seeing them at home and thinks I need them. Oh and I apologize for Abby (almost 4) and Aidan (5) who raided your ice chest because I forgot to bring them something to drink.”
Fear, pride, and a bit of grief for the person who used to work Ren fair booths all the time with nary a problem. And I didn’t ask for help. I mentioned needing help to my husband, I’m sure I discussed it with Mike. In the end, I sat sick and frozen for the last two weeks, unable to focus on printing a flyer or even posting on my boards for help. I somehow thought I’d be better by now.
Silly Lorna. You have MS, a degenerative neurological disorder that at last check had left 21 lesions or “scars” in your brain and 6 on the spinal cord. (At least that explained the back pain.) In the end I feel left with two choices, both which I know are not the way to go. Go and suck it up for as long as possible, crash probably on Sunday, or stay home, envying the guys for getting out the house, plagued with guilt about not running my own booth, and duct taped to the wall by my children who are always waiting for the off-chance that Mommy is left alone with them. It’s all smiles and laughter until they find Daddy’s work table. Then it’s shuffling after them, dodging toys on the floor, yelling “where’d you get that screwdriver and put that hammer down!”
I can’t do either safely. Neither is a wise choice for my health or my children who get the most of my energy every day. When I am by myself with the children, my reserve of daily energy has to stretch out. This means less dancing –wiggling in one place until I have to use the bathroom-, playing, or even singing. I have to re-focus on daily chores, diaper changing, trips to the potty, and cooking with short term memory problems and no supervision. Plus there is the inability to nap. The only time all three are down at the same time is right now and I’m wrecking myself y being up.
So there you have it. I look too good. I’m accustomed to hiding my difficulties and putting on my best face. I didn’t ask for help, nor draw attention to the fact that things were being planned around who I could be if I pulled out all the stops. My stops have been pulled. That was last week during the cold, forcing myself out of bed to attempt something other than sitting in bed, my legs thrashing because they never seem comfy, thinking about what I should be doing. Which is exactly what I know will happen if I don’t go. Not the bed part, the feeling guilty part.
I have two days until the show opens. However set-up and getting ready begins tomorrow...oops, today. It’s now 5:17am and I’ve been trying to write this since 3am. I’m sick with fear, guilt, and indecision.
Any suggestions?
Thursday, October 15, 2009
Tuesday, March 24, 2009
I wonder if a mom with MS can keep up.
There are moments as a parent with multiple sclerosis that I wonder if I’ll be able to keep up with the kids. I wonder if my inability to think fast or move fast is going to forever alter my parenting. I am sure that if a safety issue arose my adrenaline would kick in and I would be able to perform any feat to protect my children.
But I can’t protect the garbage bags. It was 2 minutes I swear. TWO MINUTES we had our heads turned while I was vacuuming the bedroom. I had set the bathroom trash bag out in the hall for pick up, (because mark helps me limit my walking so I have energy for other things) and turned to cleaning up the present mess on my floor which was trial mix. (Don’t ask)
Anyhow I turned the vacuum off and heard Aidan say something in his mad voice about toys in the trash. Then I heard plastic bag rustling. Toddlers still don’t realize that they can be located by sound. Sure they can do the creepy quiet thing. Every parent knows what I am talking about the “oh crap they’ve been too quiet too long something is being colored, broken-insert disaster here”. It is also a quiet you HAVE to respond to because what if something bad has appened?
*And for those wondering how my children can get any time ALONE –oh forbid-I have 3 children under age 5 in my house who can all walk. I have 4 bedrooms 2 ba, and yes IT is practically impossible to watch all three at the same time unless you have 3 heads, help, or you herd them all into one place and watch them like a hawk. And they will still find a way to shove a q-tip from God knows where into their nose.
How do they conjure these items? I DO clean my house and yet children can suddenly run up with an old chicken leg. It makes me feel not only amazed and repulsed but somehow lacking in my parenting skills. I mean a 5 day old chicken leg? And where did they hide it? Because I’m sure my missing keys are there.
As I was saying, it was around two minutes that the older siblings Aidan, age 4, and Abby, age 3 as of tomorrow, were supposedly playing in their room. I was vacuuming; bad start right there because it covers most sound. So when I finally heard the bag rustling and thought “oh no not the trash”, Mark did the dude thing and thought “hey sounds a like a trash bag” but didn’t rush to check on it. I did.
The trash bag itself was missing! There was a baby doll toy from some fast food place lying on the ground and a little pile of dust. A cold chill ran down my spine. Where was the rest of the bag? I slowly turned my head to the right feeling as if I were in a horror film about to see entrails of trash all over their room. There were entrails. But only a diaper, thankfully only wet one, and another small pile of dust and debris. I thanked the Ancestors for not making it worse and began to vacuum it up. Why at this point I hadn’t collared and locked up my two children, hunted them down with a flyswatter, or tried the unsuccessful time out bench, I don’t know. I just focused on the mess.
I finished vacuuming and got ready to rest. I have lost a few of my spritely abilities as I have aged and my MS progressed which including unboundless energy. So I went into the bedroom where Mark was and got ready to stretch out. Mark got up to go get a soda from the fridge and check on the two fugitives who were most likely hiding behind the couch. Suddenly I heard Mark yelling unintelligible words and sputtering. In parent speak this is not good. If you’ve lost the ability to form curse words, something BAD has happened.
I got up and walked slowly to the living room where he was vocalizing loudly at the kids in what sounded like Muppet. (I cant say screaming, it wasn't exactly that hysterical.)As I shuffled down the hall I began to notice a trail of debris. Oh no! I turned into the living room; there was the missing trash bag! And the rest of the trash. It was all over the living room carpet. It looked as if they had not only dumped it out, but slowly sorted through it to see what goodies they could find. I held back yelling in Muppet to ask the dumbest parent question in the world “Why did you do this?” I’ve discovered this is like asking a snake why they bit you. I was met with Aidan running past me ducking and Abby on the couch looking serene as if she had done nothing.
“Get the camera and then we’ll kill them!” Mark growled. Most parents would never kill their children but threaten to on a regular basis. That or selling them, giving them to the grandparents, or moving and not telling them where we went. Very good parents would never do this. But Mark and I have found that with this many we tend to lose it and use the same exact threats our parents did with us because NOTHING else has worked. So hey while we’re screwing up our kids why not do it the same way we got screwed up and make it a tradition? I mean how many times have you used the catch all “Because I said so.” You see? I’m right. When nothing else works, do what your mom and dad would do.
But our parents wouldn’t have gotten the camera. My father would have, but none of the other parents. Thinking of him lightens my mood a bit. Its okay they had an adventure, he’d say. And adventure they sure had. As I got the camera I yelled to Mark “You know aren’t we supposed to be spanking them or sending them to their room without lunch or some time out thing? As opposed to getting the camera?” He didn’t answer.
I came back to the living room with the camera and began taking shots of the destruction. Maybe we’d use it as blackmail evidence later in life. Shooting the different parts of the mess suddenly made me feel like I was on CSI photographing the evidence of a crime.
We did send them to their rooms. Mark cleaned up the big mess because there was vacuum dust in it and right now I am very allergic to house dust or dust mites. So I went back to the bedroom. Every once in awhile a head has popped out to see if they can sneak back down the hallway and I grumble at them to get back in their room.
As I sit here I am still deciding what to do.
1. We know the suspects / but we came in after the deed so we don’t know if it was a co-op or a single job.
2. We showed disapproval by yelling /but approval by getting the camera. I know what most books and magazines would say, but the children in those magazines put a tiny bit of crayon on the wall, not a mural in permanent ink and they are perfect! So what to do about my children that gutted a trash bag to examine its contents?
This time when questioned “But why?”
Aidan said “there was a toy in there”
Note to self, never throw the happy meal toys away where they can ever find them. So semi-innocent motive. Rescuing a toy.
Should we have made them clean it up? They love to vacuum. So that’s kind of a reward. Retroactive spanking especially after taking photos would be confusing and mean. So they sit in their room and we sit in ours wondering what the parenting handbook for gremlins would say. I wonder if I moved faster, I would be able to stop them. I berate myself silently for not being the perfect mom, once again. I grow silent thinking about the times I need a cane and the time when I will need a wheelchair. How will I do it all?
Well I won’t do it all. I’ll have help. That’s that stuff I hate asking for. I always feel guilty and indebted. But I’m quickly learning if I don’t ask, I might end up bound and gagged with silly string!
The grandparents (Mark’s family), friends who are, as close as, or better than family, and Mark. I will have my mate and care-partner there at the scene of the crimes, just as confused as I am, but a bit faster. I just hope we figure out what to do with them before they…now one of them is trying to open the bedroom window!! Got to go!
But I can’t protect the garbage bags. It was 2 minutes I swear. TWO MINUTES we had our heads turned while I was vacuuming the bedroom. I had set the bathroom trash bag out in the hall for pick up, (because mark helps me limit my walking so I have energy for other things) and turned to cleaning up the present mess on my floor which was trial mix. (Don’t ask)
Anyhow I turned the vacuum off and heard Aidan say something in his mad voice about toys in the trash. Then I heard plastic bag rustling. Toddlers still don’t realize that they can be located by sound. Sure they can do the creepy quiet thing. Every parent knows what I am talking about the “oh crap they’ve been too quiet too long something is being colored, broken-insert disaster here”. It is also a quiet you HAVE to respond to because what if something bad has appened?
*And for those wondering how my children can get any time ALONE –oh forbid-I have 3 children under age 5 in my house who can all walk. I have 4 bedrooms 2 ba, and yes IT is practically impossible to watch all three at the same time unless you have 3 heads, help, or you herd them all into one place and watch them like a hawk. And they will still find a way to shove a q-tip from God knows where into their nose.
How do they conjure these items? I DO clean my house and yet children can suddenly run up with an old chicken leg. It makes me feel not only amazed and repulsed but somehow lacking in my parenting skills. I mean a 5 day old chicken leg? And where did they hide it? Because I’m sure my missing keys are there.
As I was saying, it was around two minutes that the older siblings Aidan, age 4, and Abby, age 3 as of tomorrow, were supposedly playing in their room. I was vacuuming; bad start right there because it covers most sound. So when I finally heard the bag rustling and thought “oh no not the trash”, Mark did the dude thing and thought “hey sounds a like a trash bag” but didn’t rush to check on it. I did.
The trash bag itself was missing! There was a baby doll toy from some fast food place lying on the ground and a little pile of dust. A cold chill ran down my spine. Where was the rest of the bag? I slowly turned my head to the right feeling as if I were in a horror film about to see entrails of trash all over their room. There were entrails. But only a diaper, thankfully only wet one, and another small pile of dust and debris. I thanked the Ancestors for not making it worse and began to vacuum it up. Why at this point I hadn’t collared and locked up my two children, hunted them down with a flyswatter, or tried the unsuccessful time out bench, I don’t know. I just focused on the mess.
I finished vacuuming and got ready to rest. I have lost a few of my spritely abilities as I have aged and my MS progressed which including unboundless energy. So I went into the bedroom where Mark was and got ready to stretch out. Mark got up to go get a soda from the fridge and check on the two fugitives who were most likely hiding behind the couch. Suddenly I heard Mark yelling unintelligible words and sputtering. In parent speak this is not good. If you’ve lost the ability to form curse words, something BAD has happened.
I got up and walked slowly to the living room where he was vocalizing loudly at the kids in what sounded like Muppet. (I cant say screaming, it wasn't exactly that hysterical.)As I shuffled down the hall I began to notice a trail of debris. Oh no! I turned into the living room; there was the missing trash bag! And the rest of the trash. It was all over the living room carpet. It looked as if they had not only dumped it out, but slowly sorted through it to see what goodies they could find. I held back yelling in Muppet to ask the dumbest parent question in the world “Why did you do this?” I’ve discovered this is like asking a snake why they bit you. I was met with Aidan running past me ducking and Abby on the couch looking serene as if she had done nothing.
“Get the camera and then we’ll kill them!” Mark growled. Most parents would never kill their children but threaten to on a regular basis. That or selling them, giving them to the grandparents, or moving and not telling them where we went. Very good parents would never do this. But Mark and I have found that with this many we tend to lose it and use the same exact threats our parents did with us because NOTHING else has worked. So hey while we’re screwing up our kids why not do it the same way we got screwed up and make it a tradition? I mean how many times have you used the catch all “Because I said so.” You see? I’m right. When nothing else works, do what your mom and dad would do.
But our parents wouldn’t have gotten the camera. My father would have, but none of the other parents. Thinking of him lightens my mood a bit. Its okay they had an adventure, he’d say. And adventure they sure had. As I got the camera I yelled to Mark “You know aren’t we supposed to be spanking them or sending them to their room without lunch or some time out thing? As opposed to getting the camera?” He didn’t answer.
I came back to the living room with the camera and began taking shots of the destruction. Maybe we’d use it as blackmail evidence later in life. Shooting the different parts of the mess suddenly made me feel like I was on CSI photographing the evidence of a crime.
We did send them to their rooms. Mark cleaned up the big mess because there was vacuum dust in it and right now I am very allergic to house dust or dust mites. So I went back to the bedroom. Every once in awhile a head has popped out to see if they can sneak back down the hallway and I grumble at them to get back in their room.
As I sit here I am still deciding what to do.
1. We know the suspects / but we came in after the deed so we don’t know if it was a co-op or a single job.
2. We showed disapproval by yelling /but approval by getting the camera. I know what most books and magazines would say, but the children in those magazines put a tiny bit of crayon on the wall, not a mural in permanent ink and they are perfect! So what to do about my children that gutted a trash bag to examine its contents?
This time when questioned “But why?”
Aidan said “there was a toy in there”
Note to self, never throw the happy meal toys away where they can ever find them. So semi-innocent motive. Rescuing a toy.
Should we have made them clean it up? They love to vacuum. So that’s kind of a reward. Retroactive spanking especially after taking photos would be confusing and mean. So they sit in their room and we sit in ours wondering what the parenting handbook for gremlins would say. I wonder if I moved faster, I would be able to stop them. I berate myself silently for not being the perfect mom, once again. I grow silent thinking about the times I need a cane and the time when I will need a wheelchair. How will I do it all?
Well I won’t do it all. I’ll have help. That’s that stuff I hate asking for. I always feel guilty and indebted. But I’m quickly learning if I don’t ask, I might end up bound and gagged with silly string!
The grandparents (Mark’s family), friends who are, as close as, or better than family, and Mark. I will have my mate and care-partner there at the scene of the crimes, just as confused as I am, but a bit faster. I just hope we figure out what to do with them before they…now one of them is trying to open the bedroom window!! Got to go!
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