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Rising Tide

Pass It On

One of the hats I wear as the caregiver support for Lynn is to help him promote his book.  As I have mentioned before, when he no longer was able to work, he began to write. His first book, “Rising Tide,” was published a couple of years ago.  Those who are not in the publishing industry assume that the publisher promotes the book.  Not so these days as the only books that are advertised or extensively promoted are those from already known authors. Therefore, Lynn spends a great deal of his day contacting book clubs who might be interested in reading his book and offering them a free promotional copy.  He also writes a blog about writing and interacts with book sellers.
One of his contacts who writes a blog about authors is featuring him and his book this week.  Check it out!   This is a link, www.kaitlinmichelle.com, to a feature article which includes a short interview with him as well as an except from the book, the official trailer, and a short bio about Lynn.  Due to the limitations he has from MS, Lynn is limited in marketing his book to the use of social media.  He is trying to start a grassroots movement to promote his book, “Rising Tide.”  I hope you will check out the article and pass it on to others who enjoy reading.

Supporting Lynn in his Work

One of the many challenges I face each day is how to devote the time needed to meet the obligations of my employment and give Lynn the care and attention he needs.  I’ve found that whenever he calls me back to his room for assistance during the day, if he’s tired (and what MS patient is not tired most of the time), he will say, “while you’re here, would you ….” Often that request is related to typing an email response for him or copying something off a web address.  Therefore, I find that in addition to my own job, I often am assisting him with his.  Recently, though that has gotten better.
My daughter has decided to be a stay-at-home mom.  That’s great news and I’m pleased that she wants to do that.  I think it’s the best possible world when Mom can stay home with the children.  That being said, in this economy, it also frightens me that she and her husband will not be able to make ends meet.  I pray for them often that they will find a way to be successful in what they have chosen.  While it’s nice for them, I’ve also discovered it’s going to be nice for me. 
Currently, Lynn’s son comes on Mondays and Fridays for a few hours to help him work out and he’s occasionally been helping him, as well, with typing.  On Thursday’s Suzie comes for a few hours and helps him with his marketing and typing.  Now Sarah will also be available a few hours a day on the days he does not have anyone else coming.  That means that he will now have a secretary, so to speak, five days a week who can help him with his manuscripts, internet research, marketing, and email responses. Isn’t that great? It really takes a burden off me to have this available.
There are still some things though that I do for him that he doesn’t want others to do.  For example, Harper Voyager is accepting unsolicited manuscripts during the first two weeks in October.  What an opportunity for Lynn!  As a new author it’s very difficult to get published because many publishing houses will not accept unsolicited manuscripts.  They want them to come through an agent but an agent is difficult to get if you have not been published.  That’s why you hear of more people being self-published these days.  Lynn’s first novel, Rising Tide, was published by Tate Publishing and they were great but Harper Voyager specializes in fantasy/Sci-Fi/supernatural fiction which is his genre.  If they selected his manuscript for publication, they would already have a built-in audience to market the book to.  (all prayer support on that front would be appreciated)
When he learned of this opportunity, he immediately dusted off the manuscript for this second book.  Though his second book had been written, it had been a while since he had looked at it.  When this opportunity came up, he, of course, wanted to take advantage of it, so he began tweaking the manuscript.  Though he writes the books, I edit them, so this adventure was a project for both of us.  Last weekend I stayed up nightly till 3 a.m. editing the book (that’s why I had no blog last week).  We submitted it on Tuesday and I must say, it’s a good book.  He’s done an awesome job with it.  Originally, I thought it was a little weak in some areas but now it’s action packed and flows well. I really hope they choose it as one of their selections because it really is good.  
Though he’s the writer and the books he creates are his projects, I’m blessed to be able to be part of it.  God opened a door for him when he became disabled to allow him a new career.  It’s certainly not an easy career but it’s one that he can do from home when he has the energy to do it and now He has provided Lynn (and me) with the resources to help him participate in his career choice on a regular basis.  It’s so important for someone with MS who is totally disabled to feel productive and useful and to have a job to get up for each day as well as goals to pursue. I think that without that drive to produce, the person is more likely to decline in his/her health and abilities.  God gave us work because we need to feel productive and I am so glad that Lynn has found his new career and has a job to do. 
So keep your fingers crossed that his manuscript for Eden’s Wake is selected for publication.  We might not know for two-three months.  We were told if no news by three months, it was not chosen so we could learn the status by default.  If you like adventure fantasy, take a look at Rising Tide.  It’s a very good read and even was selected as a finalist in the National Indie Excellence Book Award for 2012.  Keep your fingers crossed for us!

Live in the Moment

One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes.  I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle.  Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way.  We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide.  This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories.  He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical.  He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs.  So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot.  The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill. 
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa).  We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10.  By 9 he had to call and cancel.  For the third Saturday in a room, he just didn’t have the energy to supervise a construction project. 
From Lynn’s perspective, he’s getting sick and tired of being sick and tired.  It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way.  From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment.  For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything).  In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door.  Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.”  He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something… 
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver.  He looked at me and said, “why does she call herself a caregiver?  She doesn’t do half of what you do everyday for me.”  I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc. 
I understand where he was coming from; however.  There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful.  I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is functional but mentally is dysfunctional.   But caring for an MS patient is uniquely challenging, I think.  For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead.  For MS, that’s not true.  MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function.  Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc,  you can’t effectively plan hour to hour sometimes much less day-to-day.  For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call.  If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us.  Contact me through Skype.  My ID is MScaregiverdonna.  Send me your contact information and I’ll add you to the conference call group.  I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….
Donna

Helping with Lynn’s Career

As I mentioned in the page called, “Lynn’s story,” he soon became unable to work in his chosen profession as a carpenter after he was diagnosed with MS.  He was in his 40’s at the time and wanted very much to continue to work.  However, his physical limitations and his fatigue made working in a physically demanding job impossible. So he looked for other options and discovered he had a talent for writing.

Rising Tide available from internet bookstores

Lynn has written three books and is on his fourth.  Only one has been published so far, Rising Tide.  His publisher did a great job of supporting him during the editing and publication process; however, they do not do a great deal of marketing the book after it is released. They sent out the initial press release and then sent him information about how to market the book himself through book signings and giving talks.  They pretty much leave it up to the author to promote himself.
That’s fine if you can travel across the country or have the energy to do talks and book signings but it’s very difficult for Lynn to do that now. Since we do not have a way to transport his powerchair, he has to use a manual wheelchair for trips.  It’s not very comfortable for him after about an hour, especially since he cannot adjust his position himself. Then there’s the difficulty actually signing a book.  He puts his signature in the forward but truthfully, it’s a scribble.  Also, he has to be catheterized intermittently.  He can’t do that himself which poses a problem in a public area.  Do I take him into the ladies’ room or do I go into the men’s room?  Most public places do not have a one-room restroom where we can  into it together.
So… instead of going “on the road” he’s marketing to book clubs around the country by email.  I’m very proud of him.  I’ve written a draft that he can copy and paste and he searches out book clubs and sends them information about his book himself.  He offers to send them a free copy to consider for their club to read.  It’s a very slow process.  He’s sent out over 200 offers and so far we have mailed out 10 books.  Most don’t respond but if he keeps at it, he will eventually get his book out into the book reading community and, who knows, maybe that will generate book sales.
What I do know though is that it gives him purpose each day. He has a job to go to now.  He can only tolerate doing so much each day, but it gives him something to look forward to when he gets responses and it gives him work to do.
On the other hand, it also gives me work to do….I type the drafts, I record where he sends letters on a spreadsheet, I mail out the books, respond to any emails he gets, help type in information if needed… Whatever he does, I have to be part of it for him to be able to do it.  Many people who do not have experience with being a caregiver, do not realize that there is no part of that person’s life, hobbies, interest, care that you do not take part in.  And while I want very much for his writing to be successful, at times, it just becomes one more job for me to do.
I’m keeping my fingers crossed though on this marketing campaign.  If he could become known and his books provide him some income, I might just be able to get that van I want.  : )    Want to buy a book?
Seriously though, check it out if you’re interested.  Go to his website for more details www.lynnsteigleder.com   It’s a good read.